Thank you for this video! I, my daughters and grandchildren has H-EDS, POTS, MCAS, etc. It took me 60 years to be diagnosed. I've lived in severe pain all my life. I was told I had every thing under the sun, particularly that I was a hypochondriac. Now I know better. I also have ADHD and I'm on the Spectrum.
I'm the first in my family to get diagnosed, but 100% sure my mom and I got it from grandma. Got the triad - hEDS, MCAS, and POTS and their friends - ASD & ADHD. Joint Hypermobility (including benign) is more common in those of us with ASD. (as mooseymoose pointed out)
This shades a lot of light about my family and now I get why none of us (mom, three sisters) have been diagnosed. Still much more awareness is needed :/
OMG omg you have finally answered my prayers. I have ehlers danlos and I really appreciate you finally doing this video because so many doctors don't know enough about it especially dermatologists. Thank you ❤❤❤❤
@@DrDrayzday Hi Doctor, love your videos, very informative. Had a request, can you please make a video about syringoma. I have been suffering from it for the last 10 years and don't know how to get rid of it, it's increasing with time and it's all around my eyes. Can you please suggest effective treatments, side effects post any laser or surgical treatment and preventive measures. Thank you.
Should note that not all people who have hEDS have all this. I actually have pretty decent healing and my skin is soft and somewhat stretchy but not translucent. It’s more so important because of how often it’s missed (I was diagnosed at the age of 27). Also POTS and autonomic issues generally coincide with EDS. I was diagnosed with POTS and gastroparesis before EDS.
Thanks for mentioning. I have a few of these symptoms but certainly not all of them. I think I might have POTS which hEDS comes up a lot around that and I've always had hyper mobility in my joints, to the point where I will injure myself without realizing I stretched too far. I was diagnosed with fibromyalgia, the meds help, but I'm curious when people say they are in chronic pain, what it feels like. Not sure if my chronic pain matches that or not. I also get migraines a lot.
@@primrosedahlia9466 hEDS does cause more skin elasticity, I have hEDS and my skin is very stretchy, it only states in the diagnostic criteria that it’s usually more mild hyper-elasticity than the other forms of EDS
I could cry! Finding any doctor, let alone a dermatologist, know what this is makes me emotional. My siblings and I have fought so hard to find care for our hEDS. THANK YOU
ME too! I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit 🦓
Mine did too! I'm turning 40 and I am FINALLY being sort of "recognized" and it's really annoying! I feel like we're victims of the lack of knowledge around EDS and HSD in general 😢
I was diagnosed with hEDS last year at age 66-two years after my younger son was diagnosed at age 32. Almost impossible to find doctors who understand how to deal with it.
My podiatrist was the first person to tell me I was hyper-mobile in my big toe ball joint and that it caused my arch to fall giving me plantar fasciitis. Since then, my rheumatologist (fibro) and orthopedic doctor have both told me I am hyper-mobile (easily get tendonitis). I have several of the skin signs you mentioned. My children do too. I’ve also learned that ADHD and fibromyalgia both have a decently high comorbidity with hyper-mobility so I hit the genetic lottery. It is fun to mess with coworkers and patients at work by sitting in weird, but comfortable positions. 😂
@@Truerealism747Correct! I don't think I do not have one thing that hEDS and MCAS and dysautonomia are assiciated with including autism runs in my family and I've been told by autistic friends that I'm autistic, first developed syncope from OI at age 12, later POTS, then fibro at age mid-30's, MECFS @age 53 so never worked another day of my life since then, severe migraines at age 21 following my first miscarriage with hemorrhaging so severe at only 6 weeks I had to have a D & C without anesthesia, then every subsequent pregnancy after that one was severe hemorrhaging at some point in time, got CVID from birth or early childhood, plantar fasciitis, repeated sprained ankles, 12 spinal fractures, 9 of which were from whiplash, 2 from a rotational lower back injury couple months ago when the neighbors insane trained attack dogs on shock collars coming after my 5 lb dog to kill him and then they would have gone for my 8 lb dog but I didn't let them caused those two lumbar compression fractures and then only my 10th fracture at age 59 in 09 was from a big fall on ice so could not possibly be related to loose ligaments, had hugely snapping, super loud anterior talofibular ligamentous tear at age 40 which took a year to fully heal, humongous pops in my back for unidentified ligamentous tears, tore my sacrotuberous ligament near my SI joint passing out backwards on my bathroom floor in 2018 and that put me in a wheelchair for 2.5 months, had some kind of tweaked out knee with extreme pain from some unknown thing, now can hardly walk on both hips due to different kinds of crash landings and osteoarthritis plus a lateral pelvic tilt higher on the left and by next injury it was higher on the right, then around age 42, gave myself a floppy old mallet finger on 3rd digit, distal phalange of dominant side from scrubbing the carpet with an outstretched hand, have also had labral tears in R hip and R shoulder noted during shoulder arthroplasty surgery at age 54 for supraspinatus tendon nearly very close to dangling at nearly 100% torn through, badly sprained big toe that has hurt now x 50+ years, TMJ with bruxism and once a locked shut mouth while on vacation plus also hernias and organ prolapses can also be related but have only had 2 of them. Other than that I'm just fine!
OMG my podiatrist told me the same thing about my big toe lol. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I’m diagnosed with h-EDS and have many things mentioned. One additional problem that I have and share with other EDS’ers is Raynauds Syndrome. My fingers turn purple and get extremely painful in the cold. Great video. Thank you for acknowleging and educating!! ❣️
Mine switch from ice cold and clammy to flaming red when my blood pools, I also have POTS. My feet get so cold they keep me from sleeping when it's Winter.
A much needed video. Thank you for posting. It took me until age 60 to be officially diagnosed after seeing 25 doctors and surgeons and being dismissed. I also had a tethered spinal cord and have many comorbidities that go along with EDS. It's much more common than people realize.
Took me years as well. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I was recently diagnosed with hypermobility spectrum disorder (Dr wasn’t comfortable saying it was EDS) and you just blew my mind saying dyshidrotic eczema is common for EDS. I’ve had it since childhood! The more I learn about hEDS/HSD the more I realize things are connected
I have the same condition, almost every symptom of hEDS is there, but for the diagnosis not "enough" hypermobility of some joins, because of polyarthrose in my hands. The doctor told me, that the decoding of hEDS is just a question of time. So he will inform me imediatly, when the diagnosis can be affirmed. My personal tip to avoid skin irritation /injuries: I wear my underwear inside out, so that the seems have no contact to my skin
@@Truerealism747 yes, but not only. Also pain in hips, back, shoulders, hands... Almost everywhere, exept elbows. Difficulties with coordination (grabbing little stuff, twisting and rotation), restless legs and tremor.
hEDS is definitely more common and underdiagnosed. Going down the list, I have the majority of the issues or a family member with them. On the positive, the smooth velvet skin makes us 10 years younger (but also look healthier than we feel with the chronic pain).
Agree and our translucent skin. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I was one of the ones who begged you to cover EDS!! Thank you SO MUCH. This was so incredibly helpful and even helps me bring more to the conversation with my doctor. Thank you so, so much. I feel so seen.
I did as well ....for years! I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I know right?! I thought I was seeing things when I first read her vid title. FINALLY folks are acknowledging we exist! & we happen to be in pain 24/7. 🤷♀️🦓
Me too! I have been asking her for years! I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
0:04 Thank you so much. It took me 9 years to be diagnosed with Hyper Mobility Syndrome. It becomes a syndrome when their is pain in the larger joints. Neck, shoulders, Hips etc. I live with chronic pain and had to stop working when I was 43. I love your channel so much. Thanks for sharing your knowledge with the world.
It took me years as well. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Thanks for this video. I married a person unknowingly with EDS and have 3 children with EDS. We spent many hours in the ED for sutures when my children were younger and even as adults. My son with EDS also has a jugular aneurysm. One problem I found is trauma to tissues increased blood engorgement in the tissues leads to tissue necrosis and even small wounds turn into huge wounds that require prolonged healing. My son fell and had a huge hematoma across his whole left upper arm. The subsequent skin necrosis was full thickness exposing blood vessels. This wound took well over a year to heal. It has been challenging needless to say. Thanks for the info. I really appreciate the new info that my research didn’t cover.
It is always good to know about the diagnosis vs not know. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Agree! I would love to learn more about skincare with EDS. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I have hEDS and it’s so under known about, even in the medical community.thank you for covering this topic. I’m also waiting on genetic testing results as they wonder if I have vEDS. Which I don’t want. I also think many more people than are diagnosed have it, it just takes so so long to be diagnosed. I didn’t get diagnosed until I was in my mid 20’s!
I was diagnosed in my 30's after years of weird symptoms. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Very surprised to see this video from you because I don’t often hear a lot about EDS. I have vascular EDS, I had my first vascular event when I was 13, i had a trans ischemic attack, basically a mini stroke. Lost blood flow to the right side of my brain and so the left side of my body was completely paralyzed, but then it eventually resolved itself. Growing up I always had comments on how soft my skin was. Some of the daily problems I have are Raynaud’s and spider veins, especially all over my legs. Being double jointed I seriously sucked at sports, and I couldn’t understand why until I was diagnosed.
It's funny how it all makes sense once you receive the diagnosis. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
My granddaughter has that, plus pots and another one. She went from a top notch athlete to acting like a very old woman at the age of 17. When they started investigate on what was going on they found this issues plus a tethered spine. You are describing my granddaughter’s skin.
THANK YOU for covering this! I have hEDS and always struggle to know what to use on my skin. Could you do a follow-up video about which products help and don't help our skin?
I was wondering the same thing so... I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit. Definitely join so we can all learn together.
Thanks so much! I was clinically diagnosed with this type of EDS some years ago. There is no genetic test useful for this type, as you mentioned no blood test can be used. However, my geneticist decided to try it with me and the result was a preliminary result of Spondylometaphyseal Dysplasia Sutcliffe Type😂which is another disease of the connective tissue. The worst thing is that these are invisible diseases, so unless you're in pain in the ground, people, including physicians, won't take us seriously. I spent ten years from one orthopedist to another just to hear them telling me that I was stressed out...
@@Truerealism747 Hypermobile EDS can't be diagnosed by genetic test yet. There are clinical physical tests that my geneticist and orthopedist guided me about to give the diagnosis. However, the geneticist thought it would be a good idea to do the genetic test because she saw in me some features similar to cousin diseases, like Marfan (the texture of my skin and the length of my fingers and toes, for instance), and she thought that there might be another reason for my symptoms
Most doctors I have met have been idiots. They have zero interest in validating their clients crippling symptoms. EDS patients suffer. I think i read its the third most painful illness in the world...not to mention the dysautonomia, digestive issues, not toleratimg medicine, and a myriad of other issues around the body
It is so hard to find doctors that understand the disease. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
My mother has Lupus and EDS. I have EDS and have 10 out of these 12 issues among others. In my mid thirties. Dignosed last year after years of being told its in my head and prescribed antidepressants. Thank you for this video and spreading this information. I wish more doctors would educate themselves and unlearn their bias.
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Thank you so much for doing this video! My chiropractor identified hyper mobile ligaments, my dermatologist identified the dermatographia, my rheumatologist identified cold induced hives (non-lupus), and finally, my gp is treating me for mast cell activation. I feel like all of these things are the one thing combined. The mast cell therapy has really helped my gluten and lactose intolerance & I take Zyrtec in addition for the urticaria. When I see my doc on the 17th, I’m going to ask about this specific diagnosis that encompasses all the things (including the feet issue! Nobody I know has ever had the heel fat dots like me!!!).
Thank you so much for doing this dedicated video! So many doctors are really dismissive and/or simply aren’t very familiar with EDS, so patients have to educate ourselves in order to properly advocate for good healthcare. I have so many of these skin signs, including super stubborn KP, stubborn acne and folliculitis, papules on my feet and wrists, and a problem with flushing that we think is mast cell related (I’m finally seeing an allergist for it this week). Something else that is important to know in dermatology for EDS patients is that we often need more or different numbing agents, so any time you’re having a biopsy or anything like that, be sure to communicate clearly about what you can and can’t feel! I had to have a mole removed last year and had to ask for extra lidocaine. I was really glad that my derm told me I shouldn’t feel anything, so I knew as soon as I started to feel pressure that I was not numb enough, and it just barely started to hurt before I could ask for more lidocaine. And of course now I’ve got a nice, weird-looking atrophic scar to show for it 😆
Absolutely! Every time I go to the dentist I need a ton of lidocaine! I had a skin biopsy last year and have an atrophic scar too....have a few videos on it. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
My niece and nephew both have EDS. Will be sharing this with them. My niece is currently in nursing school and intends to go into neonatal nursing - we're very proud of her ❤
Happy Monday! How fortunate we are to have this channel to address issues like this one that most of us are not familiar with. You are like our sister who continues to educate us. You are the best 🙂
Skin stretching out permanently is also a huge problem. It got worse and worse with each of my pregnancies, and I only gained 35 pounds with each one. Even the temporary bloating from appendicitis made it worse. 😢
Agree...that is why I will never get fillers in my face! I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Thank you Dr. Dray for talking about HEDS. I was diagnosed last year really by accident at the age of 58. A lifetime of health problems finally made sense. I was fortunate, as the person studying my case was my son's former supervisor at the U of M Michigan Medical and he and a colleague did extensive reading up on all my medical issues. I also have erythromelalgia which was diagnosed in 2014 before having an acute stroke.
It is so great to finally have a diagnosis. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Wonderful! Thank you! You confirmed so many things I have instinctively concluded over the years. Regarding Estrogen: I found your referenced article. Being post menopausal, HRT is something I have instinctively felt would help my hEDS. I've seen multiple so called "hormone specialists" recently and have been completely gaslighted regarding HRT. From one saying I need a psychiatrist to another prescribing awful, dangerous medications... much more dangerous than Estradiol, progesterone and testosterone. Now, armed with this article, I will give it another try. Thank you again.
There’s some great HRT specialty on UA-cam - Menopause Taylor and Susan Hardwick Smith and Mary Claire (forget the rest) are 3. I’ve learned so much from them. Good luck!
I personally take estrogen (birth control pills) and will probably never stop because if I stop them as they are instructed once a month, my hypermobility gets worse and it's not worth it.
I was wondering the same thing so... I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit. Definitely join so we can all learn together.
I am so happy you addressed EDS! My daughter has Behcet's disease and to see you addressing something more on the uncommon spectrum of health issues is very refreshing! Thank you for ❤❤
Thank you for this video. I'm 49, and I have 2 daughters and we all suffer from undiagnosed hEDS. Not a single dr will ever consider it, even after nothing else fits. I had 3 babies and not a single stretch mark. I currently am dealing with another outbreak of hives. Thank you for being a dr who recognizes this as a valid diagnosis!
Thank you so much, Dr. Dray! I have hEDS, and our weird issues are rarely if ever addressed anywhere. I feel so seen. I was already a big fan, but now I'm definitely a fan for life!
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Chronic idiopathic urticaria is horrible. If the classic remedies fail, see an allergist and ask for Xolair injections. It helps severe cases that won't clear up. Seriousy. It saved my sanity and gave me back my life.
I have that as well. I was on everything including Xolair. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
THANK YOU! It took over 20 years to get my diagnosis! and that’s only because of TikTok.. I figured out I needed testing from women who shared their stories. I so appreciate you being one of the ONLY doctors who knows what it is and is sharing info.. Hopefully women won’t have to spend 20 years in terror and confusion like me (we often end up with PTSD btw) Ps anyone with this please look into Heal with Tracy 🙌🏼
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
OMG IM SO HAPPY!!!!! I can’t believe I didn’t see this sooner. I’m one of your followers who has asked for this video multiple times and I am beyond thrilled that you made it happen for us! Thank you thank you thank you! It’s almost impossible to find content about how EDS affects the skin (other than what’s in the diagnostic criteria). A lot of people with the disorder say they look eternally young while others seem to age prematurely, so it’s a wide spectrum of experiences that almost never gets addressed. Thank you again. This means so much to me personally. I value your advice and thoughts very much!
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
OMG!!!! I asked if you could do this video awhile back, sooooo happy you did! I have hEDS and can spot it relatively easily as it comes with a long list of comorbidities that become somewhat obvious when you spend time with the person and put together all the similarities. I have a health science degree and while I'm not a doctor, when I see people in my life who have skin that almost looks like they were born premature, who get dizzy when they stand up or are out of breath walking up the stairs, who also have adhd/asd, seem to have a latex allergy going on, can't stand LEDs, and later in life got allergic reactions to pineapples, bananas, who stands with their legs locked, who have a high and narrow hard palatte, who get petechia from time to time after a workout or getting sick... it's just so obvious at that point. And for me, I meet people like this all the time. If you have hypermobile Ehlers Danlos Syndrome, you are highly likely to have the other two conditions in the EDS trifecta, those being Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Syndrome. And those things are just so easy to spot if you have these conditions and spend time with someone. I estimate the odds are more around 1 in 50 people. My HEDS doc that has EDS also thinks this. Thank you so much for this!
I dont agree. While I do believe its under diagnosed, I dont believe the numbers are that high. The thing is that Theres a lot of people with hypermobility. But they dont have the serious issues that EDS patients have
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I was diagnosed with with POTS & hEDS - so thank you so much for this upload. I was told that people with hEDS do not numb as well. Have you seen that in your practice when numbing the skin before interventions? I have this problem with dental procedures that require numbing.
I have hEDS. This is 100% true. I've woken up in the middle of every surgery I've ever had, and I need more medication more often to manage pain. The last time I went to the dentist, I had multiple repeated injections into my jaw because the numbing would only last 10 minutes. It was absolute agony.
@@whiteislandmoon9675yes it’s common for EDS patients and well documented in medical literature BUT still so much ignorance among Dr and dentists!! So tired of the medical gaslighting. I now have a severe phobia of dentists thanks to one who refused to believe me and got mad when I told him the anesthetics kept wearing off. 😢
They do not numb well. I have always needed for anesthesia. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I was diagnosed 10 years ago, and since then have watched and read endless "explanations" of H-EDS...you knocked it out of the park Doc. spot on with every symptom. Your attention to detail in your videos is always sound medical advice that is well researched, and this one almost made me cry bc finally a doctor got it right. Just for diagnostic info. The Ehlers-Danlos Society has the current criteria for diagnosis available in a pdf that can be printed and brought to a physician for review, and patients can check what criteria they fit and get a reliable idea if they have the condition. The site also provides the information regarding Hypermobile Spectrum Disorder which is the diagnosis given when a person does not fit the current H-EDS criteria. The one medical diagnostic criteria that was added to differentiate between the two is a mild to moderate mitral valve prolapse which requires a echocardiogram for diagnosis. Amazing work Doctor I cannot express how grateful I am that finally someone got it right.❤
I was told they officially call it HMS instead of hEDS to not confused doctors that its as dangerous as some of the other EDS Gene tested types🤷. That doctor was an idiot tho...so maybe he was wrong
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
When I was born I had welts all over my body for a day or two my poor mum was embarrassed to show me to people. Finally at 47 years I got diagnosed with hypermobility eds. The more I learn about it the more I link my past and current issues with my body. Too many of us get the psychosomatic label as I did 10 years ago. When I showed the doctor the scoliosis I had since being a teenager the doctors finally disregarded that diagnosis.
I spent 2 years with hives. It was a mess. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Definitely more common than realized; under-diagnosed and not well understood. Almost 60, and have self-diagnosed with MCAS, EDS/Hypermobility, and Lipedema. There is so much crossover with all these conditions. Still can not find a doctor who has even heard of these conditions, let alone knows how to treat them. 🙏🏼
I feel so seen! Thank you so much for making this video. You answered some EDS skin questions I've had for years (that no other doctor or self-study has been able to answer). I'm always so grateful to find more information and I'm especially grateful when EDS is discussed on big platforms like this. When I was first dx'd a decade ago, I was the first EDS patient that my GP had ever had. Now we're a growing community as more patients and doctors become aware of the condition. Thanks, Dr. Dray!!
My GP understands it thankfully. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
What an incredibly helpful video. I meet more than enough of the markers for hEDS, and it's a common comorbidity to my mast cell/hematologic disease: systemic mastocytosis. I've been using skin care, but only recently wondered if it's at all useful for me, and how to move forward with caring for my skin while not harming it. Adapalene has been amazing at handling my acne, but I hope it isn't doing any harm in other ways. Thanks for focusing on this, and discussing some of the signs and concerns. AND for mentioning mast cell reactions. Many folks with forms of EDS also suffer from mast cell activation syndrome, POTS, and many other comorbid issues.
I use retinoids and vitamin C and these have helped. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
EDS runs in my family. Last month she bumped into a table with her knee. Her skin split open, and is now a really bad scar. Thank you! I have come to the realization that EDS and hypermobility is very under studied and under diagnosed. Oh yeah, my daughter hates when people discover how soft her skin is… they usually end up petting her. She danced until she was 19, but she had to retire.
I scar poorly too. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
OMG. I’m so glad I watched this! After waiting 6 months to see a rheumatologist, I was told I did not have an autoimmune disorder but was put on an annual follow up with him. This video is making me think I’ve been misdiagnosed. In particular, the “rubber glove test” was not done correctly. He pinched my arm skin. I just did the skin on my hand and the skin does stretch about 1.5 cm above my hand. And all my life I could see the sinews of my hands through my extra velvety soft hands, and the skin on my hands literally burst open if it touches anything remotely rough or hard. I still have a scar that’s purple and indented from lightly touching a flower pot last November and the store clerk gave me a bandaid because it was bleeding more than expected. I had surgery last July and the doctor changed the dressings an hour after surgery because she said the wounds too weepy and a week later when I went to get the stitches removed she said then that wounds were weepy. All my life I’ve bruised easily or had “weak skin” that didn’t heal well and scarred easily. I have a surgical scar from when I was 4 yrs old. I check basically every box until about #8 on this list. Can a dermatologist diagnose ehlers danlos syndrome? My rheumatologist already said I don’t have it despite the fully body joint pain and dysfunction (he’s even ordered MRI’s on some of the joints after the x-rays showed issues) and it takes way too long to get an appt with a rheumatologist. I’m so tired of being told by doctors I’m “healthy” when my knees buckle backwards without notice and my arm feels like it’s falling out of the shoulder socket and my neck seizes in pain and my fingers all click and my wrist slides out to joint and I have to literally push it back into place several times a day. And on top of all that, chronic nausea and dizziness that I’m pretty sure is POTS but the autonomic disorders subspecialty is booked up until next May and I’m on a waiting list until the end of the year in case there’s a cancellation.
I was finally diagnosed with hypermobile EDS at 67!! I can't believe specialists missed it my whole life. Issues started when I was 12. I need both shoulders and other knee replaced at the moment.
Better late than never! I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
When you confirmed my suspicion that hEDS contributed to my HS, I had tried to do a quick google before but it's hard to confirm when you don't pay for access to journals. Feels good to have those dots connect. Thank you!
Yes! Have been waiting for this video!!!! Family of hEDS. Appreciate you for this. My skin is a wreck right now and the petechia is horrible. I look like I have red freckles everywhere.
I do too...have a skin biopsy coming soon. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I haven't been here to watch in a while and WOW! This video is why I subscribed in the first place. I have said before, I just love how you explain so matter of fact with stable science data every subject you approach. You are such an amazing. If I every move to the Houston area, I want you to be my dermatologist!
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I already loved your channel but thank you so much for this video in particular!! I love hearing Dr's who are actually educated on EDS - it's been surprisingly uncommon in my experience! Especially its co-morbidities like MCAS. I just had some wisdom teeth removed & I'm thankfully healing well, but... I also had a mast cell reaction to either my sutures or to the stress of surgery itself. 🙃
Sutures are not my friend lol. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I have classical EDS and I didn’t even know until a few months ago, I’m thirty … it explains so much and I wish more doctors paid attention to the signs. At least I know now
Omg haven’t watched yet but just about to! I have heds and was only diagnosed a couple years ago. I’ve always wondered about skincare products that promote collagen and if that would be beneficial or harmful or not an issue at all for someone with a connective tissue disorder. Anyway, off to watch now! Thank you for bringing light to our illness, us zebras are grateful
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Thank you so much for this! I am currently on a waiting list to see a doctor who may be able to give me an official diagnosis of hEDS. I’ve got many of the symptoms - and many of the skin issues you’ve mentioned in this video. Thank you, because it’s enabling me to be well informed and advocate for myself when I’m in the doctors office ❤
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Totally agree. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Thank you Dr Dray, I have EDS (type III) (hEDS) and love to see more medical professionals talking about EDS and its myriad co-morbidities. I have psoriasis, EDS and other dermatological signs like the stretchy skin. Thank you for highlighting us - we're not as rare as people think!
I think it is much more common than we realize. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
thank you so so so so much!!! going to countless appointments for so many of these symptoms with just vague guidelines to cope with them only gets more tiring and spirit crushing. i wish doctors werent so hesitant to say “it seems like you can have a mild case of hEDS.” just because i cant perform in cirque du soileil, doesnt negate any of my other symptoms
Agree 100%. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I just love your hair so much. It is looking so good! Are you still using henna to dye it? Please let us in on your haircare secrets soon. Thanks for all your amazing content. You are a treasure ❤
So pleasing to find your video on this topic. I know you have video’s related to many of the conditions mentioned with product recommendations, I’d appreciate a video on what treatments do/don’t work for EDS skin-such as topical Vit C, retinoids, Corsyx, Botox etc
Agree. I have had good results with vitamin C, retinoids, and botox. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I had a rather serious hand injury 2 months ago. The surgeon who put it back together in Urgent care looked at me as he was stitching and said "You've got EDS huh?" I said "Yes. I do." He laughed and said "Your skin told me." Keratosis pilaris runs in my family.
Wow, this is wild to me. I havent been on youtube for a while but i watch your content all the time! The moment I come back i notice you did this video on HEDS. I just got diagnosed with it last month. Thank you for putting this information out there! Youre a blessing.
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I am a hypermobile woman and it is inherited. I am not sure if I have the syndrome itself or just a higher grade of hypermobility than the norm. I can see some but not all of the points mentioned in my own body. I just discovered this syndrome recently. No doctor in my entire life has ever mentioned this, only my chiropractor saw that my posture is like a hypermobile person. I mention it more frequently myself on doctors visits now that I am hypermobile
It's important to find doctors that understand. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Terrific video on EDS. It would be nice if you'd address the chronic pain issues that EDS people suffer with. Also, can you please tell us what, if anything, can help our skin esp with aging... do botox or lasers or peptides or anything work for us? More importantly, are these safe for us Gumby people? Thank you for making this video Dr Dray.
I always wonder the same thing. I personally have had good results from botox and lasers. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Thank you so much for this video. I was diagnosed with ehler danlos hypermobile type and since then it has been a challenge to learn more about its effects on all aspects of my life, this video helped a lot!
Correction my hEDS does NOT have stretchy skin, velvet like and transparent with vascular show underneath for sure. And actually Cortney Gensemer PhD at the MUSC Norris Lab has isolated the hypermobile type gene and is working on publishing it. I've submitted to this study and she herself also has hEDS. But thank you for giving a voice and awareness to us zebras as we call ourselves from the medical school saying 'when you hear hoof beats think horses and not zebras' to assume it's a common disease finding and not exotic and rare. Vitamin C also helps us because of its mast cell degranulation stabilizing affect which many are realizing is the core reason we have the problems with our connective tissues, including vascular endothelial tissues highly involved with the Covid virus. But have to say thanks for the 😂 on the kybella for my feet papules. I'll be sharing this quite informative video with my Ehlers-Danlos aware Board certified Dermatology PA. Thank you from all of us dazzle of zebras Dr
My skin is so translucent! I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I don't know if I have EDS, all I remember it's that when I was a child I was told I was hyper elastic by Drs, but surely the muscle/joint pain since I was a kid gets unbearable in the winter, and nowadays even when I do house chores it hurts, for the last few years, even when I wear gloves, I'm def seeing a Dr again, I just hope it's not arthritis 😅
Thank you for this video. I thought that I had h-EDS and went to rheumatology. I saw a nurse practitioner but she completely dismissed me because I couldn’t bend my elbow enough. I tried to explain that older people may not show that sign anymore, but she wouldn’t listen. So I thought for the past few years that I didn’t have it. But now I know that I do because I have had almost all of those skin symptoms at one point in my life or another. I’m going to ask my PCP to send me to genetics and I’m going to be way more educated so that I can advocate for myself. I really appreciate your knowledge and your ability to explain it in a way that I could understand ❤
When you have POTS, hEDS, and Mast cell disorder this is known as ….”The Trifecta”….nope it doesn’t mean I won something, in fact it means that I LOST the genetic lottery
This is the most informative video I've seen. I have so many of these symptoms except stretchy skin, but my rheumatologist doesn't want to diagnose me.
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Always wanted to know if rosacea is also more common with hEDS ? It’s so hard to get diagnosed even when I was told by my epilepsy neurologist & dentist to try and get a diagnosis. He mentioned seizure disorders are more likely with ppl who suffer from this. Thank you so much for this video ❤
I don’t know if rosacea is more common (although I suspect it is), but I have wondered if a lot of us are misdiagnosed with rosacea when we actually have a mast cell issue. This seems to be what happened to me, although my suspected mast cell issue hasn’t been confirmed yet. And when I developed facial flushing, my derm said it could be rosacea, but she wasn’t 100% sure. So far no rosacea treatment has helped, but double doses of antihistamines has 🤷🏻♀️
I have rosacea and hEDS, both diagnosed by specialists. Blood vessels are part of our convective tissue network so it would make sense that our blood vessels are weak, leading to rosacea and other vascular skin issues such as easy bruising. More serious, and dangerous is vascular EDS and yes, seizures are common with this type.
I was born with Livedo and along with KP, Icthyosis, and the tendency for my skin to imprint from clothing (I'm very sensitive to textures and tags) I got made fun of as a kid in PE class. I'm very self conscious about my skin and tend to cover up in public. I've had good luck with using scar tape after a recent surgery (the scar is so much better) and using red LED light over my skin, the wounds heals much faster and it really helps my skin improve and behave more normally and feel less dry. I also dry brush before applying any lotion but it's tough to find products that I'm not allergic to so I mix my own body butter instead. Nettle is a Histamine inhibitor so I try to include it in my skin and hair products, it has helped with hair loss due to psoriasis that I get along my hairline and eyebrows. My insurance offers the bare minimum for treatment so I've had to get creative.
Interesting about the scar tape. I love the red light too. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Diagnosed with hEDS, PoTS and MCAS but had never heard that 2 things I've always struggled with - dyshidrotic eczema and acne - were at all related! I had brought up many of these things to doctors as the "weird stuff about my body" list grew longer, but no one ever connected the dots.
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I do just want to point out one thing that you said that needs a big caveat: steroid injections. In people with EDS they are typically contraindicated because they actually destroy some connective tissue each time they are used, so most subject matter experts say to avoid them unless absolutely necessary.
I did NOT do well with the steroids. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Thanks so much for this. I’m 52 & have HEDS. I have many of those skin issues. I have Ideopathic Environmental Disorder which triggers my mast cells. I get that webbing whenever my mast cells are triggered. I appreciate your information. Using Nizoral shampoo has really helped my scalp bc of your videos!
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Hi there!!! I have Classic EDS and have a lot of skin issues. SOOO happy you're talking about this! Thank you so much!! I'm so interested in knowing how i can have a better understanding of what I can do to have a better looking aging process.
That is exactly what I am interested in! I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Can you cover sebaceous hyperplasia. I believe I inherited this skin condition from my father. It’s not painful, but it’s not pretty either. So tired of having to use a photo filter. It makes me super self conscious. Especially with all the videos of women getting “glass” skin. Thank you so much for your informative videos.❤
I appreciate these kinds of videos so much. I have EDS,Raynauds, Sjogrens severe fibromyalgia. mast cell syndrome, chronic urticaria, rosacea on my skin, and ocular, disautonomia, small fiber, and autonomic neuropathy. I'm also looking into seeing if I have tethered cord as well. It took a very long time for me to find a team of doctors who were able to figure out my complicated conditions. It seems like a lot of these diagnoses go hand in hand with people who have EDS and disautonomia.
Thank you for making this informative video. I just got diagnosed with hEDS this year after 16 years of going to doctors about the various symptoms. I developed a lipoma and the only option I was offered was surgery -- because I suspected I might have hEDS, I was hesitant to pursue it. Maybe Kybella could be a good alternative. I also started developing livedo reticularus this year and didn't know the term for it until this video. I've also been starting to suspect that my lifelong scalp issue could be psoriasis, so it was interesting to hear about that hEDS association!
I found out about this syndrome 1 year ago, and it was a mind-blowing fact that nobody at drs offices talks about. U keep having joint pain, especially during humid or hot temperatures, but in the winter as well. Have shoulder surgery almost 2 years ago, and its been hard to feel well. I don't have some symptoms, but my joints are very flexible. I turned my knee ca0 when l was teenager and keep giving me problems until today. What kind of doctor can check me out for this condition?
I think my tretinoin is working but same, not sure. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Thank you for this video! I, my daughters and grandchildren has H-EDS, POTS, MCAS, etc. It took me 60 years to be diagnosed. I've lived in severe pain all my life. I was told I had every thing under the sun, particularly that I was a hypochondriac. Now I know better.
I also have ADHD and I'm on the Spectrum.
ASD has high comorbidity with H-EDS.
I'm the first in my family to get diagnosed, but 100% sure my mom and I got it from grandma. Got the triad - hEDS, MCAS, and POTS and their friends - ASD & ADHD.
Joint Hypermobility (including benign) is more common in those of us with ASD. (as mooseymoose pointed out)
1/3 of people with JHS has ADHD
Me, my mother and at least one of my daughters (at least) all have it as well.
This shades a lot of light about my family and now I get why none of us (mom, three sisters) have been diagnosed. Still much more awareness is needed :/
OMG omg you have finally answered my prayers. I have ehlers danlos and I really appreciate you finally doing this video because so many doctors don't know enough about it especially dermatologists. Thank you ❤❤❤❤
thanks for watching! hope this is helpful
Agreed thank you 😊
@@DrDrayzday I have been watching you since you started you tube so everything you do is helpful but this is extra special!
YES. Could not believe Dr dray is addressing this!! I’m so happy. Thank you thank you.
@@DrDrayzday Hi Doctor, love your videos, very informative.
Had a request, can you please make a video about syringoma. I have been suffering from it for the last 10 years and don't know how to get rid of it, it's increasing with time and it's all around my eyes. Can you please suggest effective treatments, side effects post any laser or surgical treatment and preventive measures. Thank you.
Should note that not all people who have hEDS have all this. I actually have pretty decent healing and my skin is soft and somewhat stretchy but not translucent. It’s more so important because of how often it’s missed (I was diagnosed at the age of 27).
Also POTS and autonomic issues generally coincide with EDS. I was diagnosed with POTS and gastroparesis before EDS.
I read that hEDS dont usually show the skin elasticity. I dont have that. I have the connective tissue laxity, so sublux a lot.
Thanks for mentioning. I have a few of these symptoms but certainly not all of them. I think I might have POTS which hEDS comes up a lot around that and I've always had hyper mobility in my joints, to the point where I will injure myself without realizing I stretched too far. I was diagnosed with fibromyalgia, the meds help, but I'm curious when people say they are in chronic pain, what it feels like. Not sure if my chronic pain matches that or not. I also get migraines a lot.
@@primrosedahlia9466 hEDS does cause more skin elasticity, I have hEDS and my skin is very stretchy, it only states in the diagnostic criteria that it’s usually more mild hyper-elasticity than the other forms of EDS
So how did you find out you have it? I think I might have it too....but not a very stereotypical version of it.
@@Saibu-uo4ts there’s a thing called the Beighton Scale that they can use to score you on for hEDS
I could cry! Finding any doctor, let alone a dermatologist, know what this is makes me emotional. My siblings and I have fought so hard to find care for our hEDS. THANK YOU
Never have really met a dermatologist who wasn't basically an idiot at least around where I'm living ...
ME too! I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit 🦓
Thank you! We are a family with hEDS! Physician’s gaslight many of our symptoms. Thank you for sharing your knowledge!
Mine did too! I'm turning 40 and I am FINALLY being sort of "recognized" and it's really annoying! I feel like we're victims of the lack of knowledge around EDS and HSD in general 😢
@@LisaBullockso true diagnosed 43 autism to ADHD fybromyalgia symptoms years chronic list my mum to severe ms heds autism to minefield
Yes, they do.
I was diagnosed on my 43rd Birthday after over 20 years of chronic pain.
I was diagnosed with hEDS last year at age 66-two years after my younger son was diagnosed at age 32. Almost impossible to find doctors who understand how to deal with it.
My podiatrist was the first person to tell me I was hyper-mobile in my big toe ball joint and that it caused my arch to fall giving me plantar fasciitis. Since then, my rheumatologist (fibro) and orthopedic doctor have both told me I am hyper-mobile (easily get tendonitis).
I have several of the skin signs you mentioned. My children do too.
I’ve also learned that ADHD and fibromyalgia both have a decently high comorbidity with hyper-mobility so I hit the genetic lottery.
It is fun to mess with coworkers and patients at work by sitting in weird, but comfortable positions. 😂
And autism I have fybromyalgia heds CFS symptoms but the fatigue linked to autism ADHD to
@@Truerealism747Correct! I don't think I do not have one thing that hEDS and MCAS and dysautonomia are assiciated with including autism runs in my family and I've been told by autistic friends that I'm autistic, first developed syncope from OI at age 12, later POTS, then fibro at age mid-30's, MECFS @age 53 so never worked another day of my life since then, severe migraines at age 21 following my first miscarriage with hemorrhaging so severe at only 6 weeks I had to have a D & C without anesthesia, then every subsequent pregnancy after that one was severe hemorrhaging at some point in time, got CVID from birth or early childhood, plantar fasciitis, repeated sprained ankles, 12 spinal fractures, 9 of which were from whiplash, 2 from a rotational lower back injury couple months ago when the neighbors insane trained attack dogs on shock collars coming after my 5 lb dog to kill him and then they would have gone for my 8 lb dog but I didn't let them caused those two lumbar compression fractures and then only my 10th fracture at age 59 in 09 was from a big fall on ice so could not possibly be related to loose ligaments, had hugely snapping, super loud anterior talofibular ligamentous tear at age 40 which took a year to fully heal, humongous pops in my back for unidentified ligamentous tears, tore my sacrotuberous ligament near my SI joint passing out backwards on my bathroom floor in 2018 and that put me in a wheelchair for 2.5 months, had some kind of tweaked out knee with extreme pain from some unknown thing, now can hardly walk on both hips due to different kinds of crash landings and osteoarthritis plus a lateral pelvic tilt higher on the left and by next injury it was higher on the right, then around age 42, gave myself a floppy old mallet finger on 3rd digit, distal phalange of dominant side from scrubbing the carpet with an outstretched hand, have also had labral tears in R hip and R shoulder noted during shoulder arthroplasty surgery at age 54 for supraspinatus tendon nearly very close to dangling at nearly 100% torn through, badly sprained big toe that has hurt now x 50+ years, TMJ with bruxism and once a locked shut mouth while on vacation plus also hernias and organ prolapses can also be related but have only had 2 of them. Other than that I'm just fine!
@@joeynarciso94 getting over tendon break 9 weeks drs don't understand
OMG my podiatrist told me the same thing about my big toe lol. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I’m diagnosed with h-EDS and have many things mentioned. One additional problem that I have and share with other EDS’ers is Raynauds Syndrome. My fingers turn purple and get extremely painful in the cold. Great video. Thank you for acknowleging and educating!! ❣️
Does just your fingers turn purple or does your hands also
Hugs from another Reynauds sufferer!
Definitely my Raynauds is a beast! Not just my fingers, my hands, lips, nose, toes, feet turn purple and white. It’s also painful as heck.
Mine switch from ice cold and clammy to flaming red when my blood pools, I also have POTS. My feet get so cold they keep me from sleeping when it's Winter.
I have raynauds also. After a lot of testing it turns out that I have limited scleroderma, raynauds is one of the symptoms.
A much needed video. Thank you for posting. It took me until age 60 to be officially diagnosed after seeing 25 doctors and surgeons and being dismissed. I also had a tethered spinal cord and have many comorbidities that go along with EDS. It's much more common than people realize.
What are your symptoms of feathered cord I have heds fybromyalgia symptoms worst
Took me years as well. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I was recently diagnosed with hypermobility spectrum disorder (Dr wasn’t comfortable saying it was EDS) and you just blew my mind saying dyshidrotic eczema is common for EDS. I’ve had it since childhood! The more I learn about hEDS/HSD the more I realize things are connected
Same here. It's like all these random things I had are all symptoms.
@@NotKimiRaikkonenyes frightening what's coming next
I have the same condition, almost every symptom of hEDS is there, but for the diagnosis not "enough" hypermobility of some joins, because of polyarthrose in my hands. The doctor told me, that the decoding of hEDS is just a question of time. So he will inform me imediatly, when the diagnosis can be affirmed. My personal tip to avoid skin irritation /injuries: I wear my underwear inside out, so that the seems have no contact to my skin
@@claudiakay851 do you have much muscle pain
@@Truerealism747 yes, but not only. Also pain in hips, back, shoulders, hands... Almost everywhere, exept elbows. Difficulties with coordination (grabbing little stuff, twisting and rotation), restless legs and tremor.
hEDS is definitely more common and underdiagnosed. Going down the list, I have the majority of the issues or a family member with them. On the positive, the smooth velvet skin makes us 10 years younger (but also look healthier than we feel with the chronic pain).
And the autism what comes with it
Agree and our translucent skin. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I was one of the ones who begged you to cover EDS!! Thank you SO MUCH. This was so incredibly helpful and even helps me bring more to the conversation with my doctor. Thank you so, so much. I feel so seen.
I did as well ....for years! I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
No way! Just went to the doc today about joint pain. I am elastagirl but sometimes I feel like the tin man, just stiff! Thanks for caring about us.
That's a super accurate graphic description actually 👍 I also feel like that, elastic but stiff 😢
Lipedema is also associated with hEDS and MCAS. Thanks for explaining the skin effects of hEDS. It helps explain some things for me.
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I can’t believe this video is happening!! Thank you for caring about us! 🦓🦓🦓
thanks for watching
I know right?! I thought I was seeing things when I first read her vid title. FINALLY folks are acknowledging we exist! & we happen to be in pain 24/7. 🤷♀️🦓
Me too! I have been asking her for years! I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
0:04 Thank you so much. It took me 9 years to be diagnosed with Hyper Mobility Syndrome. It becomes a syndrome when their is pain in the larger joints. Neck, shoulders, Hips etc. I live with chronic pain and had to stop working when I was 43. I love your channel so much. Thanks for sharing your knowledge with the world.
Does your pain in your shoulders feals like chronic migraine
@@Truerealism747mine does!
Same here! My joints are a mess and I’m only 37.
@@jules8029 is it fybromyalgia or the heds though as heds causes fybromyalgia to
It took me years as well. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Thanks for this video. I married a person unknowingly with EDS and have 3 children with EDS. We spent many hours in the ED for sutures when my children were younger and even as adults. My son with EDS also has a jugular aneurysm. One problem I found is trauma to tissues increased blood engorgement in the tissues leads to tissue necrosis and even small wounds turn into huge wounds that require prolonged healing. My son fell and had a huge hematoma across his whole left upper arm. The subsequent skin necrosis was full thickness exposing blood vessels. This wound took well over a year to heal. It has been challenging needless to say. Thanks for the info. I really appreciate the new info that my research didn’t cover.
Does he have vEDS? How old is your kiddo?
It is always good to know about the diagnosis vs not know. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
This is such a gift! NO ONE talks about this! Please do a video about skincare recommendations.
Agree! I would love to learn more about skincare with EDS. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I have hEDS and it’s so under known about, even in the medical community.thank you for covering this topic. I’m also waiting on genetic testing results as they wonder if I have vEDS. Which I don’t want. I also think many more people than are diagnosed have it, it just takes so so long to be diagnosed. I didn’t get diagnosed until I was in my mid 20’s!
Do you take anything besides antihistamines for the HEDS?
I was diagnosed in my 30's after years of weird symptoms. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Very surprised to see this video from you because I don’t often hear a lot about EDS. I have vascular EDS, I had my first vascular event when I was 13, i had a trans ischemic attack, basically a mini stroke. Lost blood flow to the right side of my brain and so the left side of my body was completely paralyzed, but then it eventually resolved itself. Growing up I always had comments on how soft my skin was. Some of the daily problems I have are Raynaud’s and spider veins, especially all over my legs. Being double jointed I seriously sucked at sports, and I couldn’t understand why until I was diagnosed.
It's funny how it all makes sense once you receive the diagnosis. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
My granddaughter has that, plus pots and another one. She went from a top notch athlete to acting like a very old woman at the age of 17. When they started investigate on what was going on they found this issues plus a tethered spine. You are describing my granddaughter’s skin.
THANK YOU for covering this! I have hEDS and always struggle to know what to use on my skin.
Could you do a follow-up video about which products help and don't help our skin?
I was wondering the same thing so... I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit. Definitely join so we can all learn together.
Thanks so much! I was clinically diagnosed with this type of EDS some years ago. There is no genetic test useful for this type, as you mentioned no blood test can be used. However, my geneticist decided to try it with me and the result was a preliminary result of Spondylometaphyseal Dysplasia Sutcliffe Type😂which is another disease of the connective tissue. The worst thing is that these are invisible diseases, so unless you're in pain in the ground, people, including physicians, won't take us seriously. I spent ten years from one orthopedist to another just to hear them telling me that I was stressed out...
So do you not have heds now what is this type ime awaiting genetic test
@@Truerealism747 Hypermobile EDS can't be diagnosed by genetic test yet. There are clinical physical tests that my geneticist and orthopedist guided me about to give the diagnosis. However, the geneticist thought it would be a good idea to do the genetic test because she saw in me some features similar to cousin diseases, like Marfan (the texture of my skin and the length of my fingers and toes, for instance), and she thought that there might be another reason for my symptoms
Most doctors I have met have been idiots. They have zero interest in validating their clients crippling symptoms. EDS patients suffer. I think i read its the third most painful illness in the world...not to mention the dysautonomia, digestive issues, not toleratimg medicine, and a myriad of other issues around the body
It is so hard to find doctors that understand the disease. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
My mother has Lupus and EDS. I have EDS and have 10 out of these 12 issues among others. In my mid thirties. Dignosed last year after years of being told its in my head and prescribed antidepressants. Thank you for this video and spreading this information. I wish more doctors would educate themselves and unlearn their bias.
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Thank you so much for doing this video! My chiropractor identified hyper mobile ligaments, my dermatologist identified the dermatographia, my rheumatologist identified cold induced hives (non-lupus), and finally, my gp is treating me for mast cell activation. I feel like all of these things are the one thing combined. The mast cell therapy has really helped my gluten and lactose intolerance & I take Zyrtec in addition for the urticaria. When I see my doc on the 17th, I’m going to ask about this specific diagnosis that encompasses all the things (including the feet issue! Nobody I know has ever had the heel fat dots like me!!!).
Thank you so much for doing this dedicated video! So many doctors are really dismissive and/or simply aren’t very familiar with EDS, so patients have to educate ourselves in order to properly advocate for good healthcare. I have so many of these skin signs, including super stubborn KP, stubborn acne and folliculitis, papules on my feet and wrists, and a problem with flushing that we think is mast cell related (I’m finally seeing an allergist for it this week). Something else that is important to know in dermatology for EDS patients is that we often need more or different numbing agents, so any time you’re having a biopsy or anything like that, be sure to communicate clearly about what you can and can’t feel! I had to have a mole removed last year and had to ask for extra lidocaine. I was really glad that my derm told me I shouldn’t feel anything, so I knew as soon as I started to feel pressure that I was not numb enough, and it just barely started to hurt before I could ask for more lidocaine. And of course now I’ve got a nice, weird-looking atrophic scar to show for it 😆
Absolutely! Every time I go to the dentist I need a ton of lidocaine! I had a skin biopsy last year and have an atrophic scar too....have a few videos on it. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
My niece and nephew both have EDS. Will be sharing this with them. My niece is currently in nursing school and intends to go into neonatal nursing - we're very proud of her ❤
Happy Monday! How fortunate we are to have this channel to address issues like this one that most of us are not familiar with. You are like our sister who continues to educate us. You are the best 🙂
thanks for watching
Greetings Theresa Berg hope u r well n Happy Monday😀👍💜….
Happy Monday to you too!@@whitneybrown4067
Skin stretching out permanently is also a huge problem. It got worse and worse with each of my pregnancies, and I only gained 35 pounds with each one. Even the temporary bloating from appendicitis made it worse. 😢
Agree...that is why I will never get fillers in my face! I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Thank you for caring so much about us 💜💜💜
thanks for watching
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Thank you for covering this! I’ve seen this condition make people look a lot younger than they are and sometimes older too.
Thank you Dr. Dray for talking about HEDS. I was diagnosed last year really by accident at the age of 58. A lifetime of health problems finally made sense. I was fortunate, as the person studying my case was my son's former supervisor at the U of M Michigan Medical and he and a colleague did extensive reading up on all my medical issues. I also have erythromelalgia which was diagnosed in 2014 before having an acute stroke.
It is so great to finally have a diagnosis. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Wonderful! Thank you! You confirmed so many things I have instinctively concluded over the years. Regarding Estrogen: I found your referenced article. Being post menopausal, HRT is something I have instinctively felt would help my hEDS. I've seen multiple so called "hormone specialists" recently and have been completely gaslighted regarding HRT. From one saying I need a psychiatrist to another prescribing awful, dangerous medications... much more dangerous than Estradiol, progesterone and testosterone. Now, armed with this article, I will give it another try. Thank you again.
There’s some great HRT specialty on UA-cam - Menopause Taylor and Susan Hardwick Smith and Mary Claire (forget the rest) are 3. I’ve learned so much from them. Good luck!
I personally take estrogen (birth control pills) and will probably never stop because if I stop them as they are instructed once a month, my hypermobility gets worse and it's not worth it.
Can you talk about skincare for EDS? Specifically what we can do in regards to using retinoids/anti-aging?
She did! Listen again
I was wondering the same thing so... I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit. Definitely join so we can all learn together.
I am so happy you addressed EDS! My daughter has Behcet's disease and to see you addressing something more on the uncommon spectrum of health issues is very refreshing! Thank you for ❤❤
Thank you for this video. I'm 49, and I have 2 daughters and we all suffer from undiagnosed hEDS. Not a single dr will ever consider it, even after nothing else fits. I had 3 babies and not a single stretch mark. I currently am dealing with another outbreak of hives. Thank you for being a dr who recognizes this as a valid diagnosis!
Actually stretch marks are MORE common in those of us with hEDS
@@nicolaxoxo1yes even in males threw growth spurts
Thank you so much, Dr. Dray! I have hEDS, and our weird issues are rarely if ever addressed anywhere. I feel so seen. I was already a big fan, but now I'm definitely a fan for life!
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Omg yay! I have hypermobile EDS and love you, Dr. Dray. Thank you so much for using your platform to discuss this topic! 🫶🏻❤️🫶🏻
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Chronic idiopathic urticaria is horrible. If the classic remedies fail, see an allergist and ask for Xolair injections. It helps severe cases that won't clear up. Seriousy. It saved my sanity and gave me back my life.
I have that as well. I was on everything including Xolair. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
THANK YOU! It took over 20 years to get my diagnosis! and that’s only because of TikTok.. I figured out I needed testing from women who shared their stories. I so appreciate you being one of the ONLY doctors who knows what it is and is sharing info.. Hopefully women won’t have to spend 20 years in terror and confusion like me (we often end up with PTSD btw) Ps anyone with this please look into Heal with Tracy 🙌🏼
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
OMG IM SO HAPPY!!!!! I can’t believe I didn’t see this sooner. I’m one of your followers who has asked for this video multiple times and I am beyond thrilled that you made it happen for us! Thank you thank you thank you! It’s almost impossible to find content about how EDS affects the skin (other than what’s in the diagnostic criteria). A lot of people with the disorder say they look eternally young while others seem to age prematurely, so it’s a wide spectrum of experiences that almost never gets addressed. Thank you again. This means so much to me personally. I value your advice and thoughts very much!
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
The way you seem to have completely described the issues that have been confusing me for over a decade is wild. I will always follow Dr. Dray
OMG!!!! I asked if you could do this video awhile back, sooooo happy you did! I have hEDS and can spot it relatively easily as it comes with a long list of comorbidities that become somewhat obvious when you spend time with the person and put together all the similarities. I have a health science degree and while I'm not a doctor, when I see people in my life who have skin that almost looks like they were born premature, who get dizzy when they stand up or are out of breath walking up the stairs, who also have adhd/asd, seem to have a latex allergy going on, can't stand LEDs, and later in life got allergic reactions to pineapples, bananas, who stands with their legs locked, who have a high and narrow hard palatte, who get petechia from time to time after a workout or getting sick... it's just so obvious at that point. And for me, I meet people like this all the time. If you have hypermobile Ehlers Danlos Syndrome, you are highly likely to have the other two conditions in the EDS trifecta, those being Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Syndrome. And those things are just so easy to spot if you have these conditions and spend time with someone. I estimate the odds are more around 1 in 50 people. My HEDS doc that has EDS also thinks this. Thank you so much for this!
I dont agree. While I do believe its under diagnosed, I dont believe the numbers are that high. The thing is that Theres a lot of people with hypermobility. But they dont have the serious issues that EDS patients have
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
This is a really difficult condition to have and you have done a great service to address this.
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I was diagnosed with with POTS & hEDS - so thank you so much for this upload. I was told that people with hEDS do not numb as well. Have you seen that in your practice when numbing the skin before interventions? I have this problem with dental procedures that require numbing.
yes, there is often a problem with poor response to anesthetics
I have hEDS. This is 100% true. I've woken up in the middle of every surgery I've ever had, and I need more medication more often to manage pain. The last time I went to the dentist, I had multiple repeated injections into my jaw because the numbing would only last 10 minutes. It was absolute agony.
@@whiteislandmoon9675yes it’s common for EDS patients and well documented in medical literature BUT still so much ignorance among Dr and dentists!! So tired of the medical gaslighting. I now have a severe phobia of dentists thanks to one who refused to believe me and got mad when I told him the anesthetics kept wearing off. 😢
@@whiteislandmoon9675I woke up having a pin in my leg quiet horrific
They do not numb well. I have always needed for anesthesia. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I was diagnosed 10 years ago, and since then have watched and read endless "explanations" of H-EDS...you knocked it out of the park Doc. spot on with every symptom. Your attention to detail in your videos is always sound medical advice that is well researched, and this one almost made me cry bc finally a doctor got it right.
Just for diagnostic info. The Ehlers-Danlos Society has the current criteria for diagnosis available in a pdf that can be printed and brought to a physician for review, and patients can check what criteria they fit and get a reliable idea if they have the condition. The site also provides the information regarding Hypermobile Spectrum Disorder which is the diagnosis given when a person does not fit the current H-EDS criteria. The one medical diagnostic criteria that was added to differentiate between the two is a mild to moderate mitral valve prolapse which requires a echocardiogram for diagnosis.
Amazing work Doctor I cannot express how grateful I am that finally someone got it right.❤
Thank you so much for posting this reference! All the best to you!
I was told they officially call it HMS instead of hEDS to not confused doctors that its as dangerous as some of the other EDS Gene tested types🤷. That doctor was an idiot tho...so maybe he was wrong
thank you for spreading awareness of my condition!!! heds is more common than people realize
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
@@DrReedB0928amazing! instant follow ❤
When I was born I had welts all over my body for a day or two my poor mum was embarrassed to show me to people. Finally at 47 years I got diagnosed with hypermobility eds. The more I learn about it the more I link my past and current issues with my body. Too many of us get the psychosomatic label as I did 10 years ago. When I showed the doctor the scoliosis I had since being a teenager the doctors finally disregarded that diagnosis.
I spent 2 years with hives. It was a mess. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Definitely more common than realized; under-diagnosed and not well understood. Almost 60, and have self-diagnosed with MCAS, EDS/Hypermobility, and Lipedema. There is so much crossover with all these conditions. Still can not find a doctor who has even heard of these conditions, let alone knows how to treat them. 🙏🏼
I feel so seen! Thank you so much for making this video. You answered some EDS skin questions I've had for years (that no other doctor or self-study has been able to answer). I'm always so grateful to find more information and I'm especially grateful when EDS is discussed on big platforms like this. When I was first dx'd a decade ago, I was the first EDS patient that my GP had ever had. Now we're a growing community as more patients and doctors become aware of the condition. Thanks, Dr. Dray!!
My GP understands it thankfully. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
What an incredibly helpful video. I meet more than enough of the markers for hEDS, and it's a common comorbidity to my mast cell/hematologic disease: systemic mastocytosis. I've been using skin care, but only recently wondered if it's at all useful for me, and how to move forward with caring for my skin while not harming it. Adapalene has been amazing at handling my acne, but I hope it isn't doing any harm in other ways. Thanks for focusing on this, and discussing some of the signs and concerns. AND for mentioning mast cell reactions. Many folks with forms of EDS also suffer from mast cell activation syndrome, POTS, and many other comorbid issues.
I use retinoids and vitamin C and these have helped. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
EDS runs in my family. Last month she bumped into a table with her knee. Her skin split open, and is now a really bad scar.
Thank you! I have come to the realization that EDS and hypermobility is very under studied and under diagnosed.
Oh yeah, my daughter hates when people discover how soft her skin is… they usually end up petting her.
She danced until she was 19, but she had to retire.
I scar poorly too. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
OMG. I’m so glad I watched this! After waiting 6 months to see a rheumatologist, I was told I did not have an autoimmune disorder but was put on an annual follow up with him. This video is making me think I’ve been misdiagnosed. In particular, the “rubber glove test” was not done correctly. He pinched my arm skin. I just did the skin on my hand and the skin does stretch about 1.5 cm above my hand. And all my life I could see the sinews of my hands through my extra velvety soft hands, and the skin on my hands literally burst open if it touches anything remotely rough or hard. I still have a scar that’s purple and indented from lightly touching a flower pot last November and the store clerk gave me a bandaid because it was bleeding more than expected. I had surgery last July and the doctor changed the dressings an hour after surgery because she said the wounds too weepy and a week later when I went to get the stitches removed she said then that wounds were weepy. All my life I’ve bruised easily or had “weak skin” that didn’t heal well and scarred easily. I have a surgical scar from when I was 4 yrs old. I check basically every box until about #8 on this list.
Can a dermatologist diagnose ehlers danlos syndrome? My rheumatologist already said I don’t have it despite the fully body joint pain and dysfunction (he’s even ordered MRI’s on some of the joints after the x-rays showed issues) and it takes way too long to get an appt with a rheumatologist.
I’m so tired of being told by doctors I’m “healthy” when my knees buckle backwards without notice and my arm feels like it’s falling out of the shoulder socket and my neck seizes in pain and my fingers all click and my wrist slides out to joint and I have to literally push it back into place several times a day. And on top of all that, chronic nausea and dizziness that I’m pretty sure is POTS but the autonomic disorders subspecialty is booked up until next May and I’m on a waiting list until the end of the year in case there’s a cancellation.
I was finally diagnosed with hypermobile EDS at 67!! I can't believe specialists missed it my whole life. Issues started when I was 12. I need both shoulders and other knee replaced at the moment.
Better late than never! I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
This is life saving thank you ❤❤-an EDS girl
I get those rashes that look like nets, the hand eczema, and other skin conditions and it's really interesting to learn it's likely related to my hEDS
When you confirmed my suspicion that hEDS contributed to my HS, I had tried to do a quick google before but it's hard to confirm when you don't pay for access to journals. Feels good to have those dots connect. Thank you!
Yes! Have been waiting for this video!!!! Family of hEDS. Appreciate you for this. My skin is a wreck right now and the petechia is horrible. I look like I have red freckles everywhere.
I do too...have a skin biopsy coming soon. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Thank you again Dr. Dray. Very emotional video to watch. This condition is not known enough about in the medical field. Thank you.
Thank you so much for this video. I feel seen and I'm sure a lot of other EDS folks do too. Much love for the work you do ❤
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I haven't been here to watch in a while and WOW! This video is why I subscribed in the first place. I have said before, I just love how you explain so matter of fact with stable science data every subject you approach. You are such an amazing. If I every move to the Houston area, I want you to be my dermatologist!
Best video ever 💜🩵💚! I have hypermobile EDS and my skin is crazy fragile and stretchy! Thank you for this from Sweden
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
THANK YOU for this Video. My physiotherapist just said that I might have EDS after this was in my head for like months
Thank you for covering this topic!! I have hEDS and MCAS.
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I already loved your channel but thank you so much for this video in particular!! I love hearing Dr's who are actually educated on EDS - it's been surprisingly uncommon in my experience! Especially its co-morbidities like MCAS. I just had some wisdom teeth removed & I'm thankfully healing well, but... I also had a mast cell reaction to either my sutures or to the stress of surgery itself. 🙃
Sutures are not my friend lol. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I have classical EDS and I didn’t even know until a few months ago, I’m thirty … it explains so much and I wish more doctors paid attention to the signs. At least I know now
Omg haven’t watched yet but just about to! I have heds and was only diagnosed a couple years ago. I’ve always wondered about skincare products that promote collagen and if that would be beneficial or harmful or not an issue at all for someone with a connective tissue disorder. Anyway, off to watch now! Thank you for bringing light to our illness, us zebras are grateful
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Thank you so much for this! I am currently on a waiting list to see a doctor who may be able to give me an official diagnosis of hEDS. I’ve got many of the symptoms - and many of the skin issues you’ve mentioned in this video. Thank you, because it’s enabling me to be well informed and advocate for myself when I’m in the doctors office ❤
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Omg this means so much! ❤️ thank you. I used to appreciate my super elastic skin but now as I’m aging it’s not as fun.
Totally agree. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Thank you Dr Dray, I have EDS (type III) (hEDS) and love to see more medical professionals talking about EDS and its myriad co-morbidities. I have psoriasis, EDS and other dermatological signs like the stretchy skin. Thank you for highlighting us - we're not as rare as people think!
I think it is much more common than we realize. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
thank you so so so so much!!!
going to countless appointments for so many of these symptoms with just vague guidelines to cope with them only gets more tiring and spirit crushing. i wish doctors werent so hesitant to say “it seems like you can have a mild case of hEDS.” just because i cant perform in cirque du soileil, doesnt negate any of my other symptoms
There is no such thing as "mild" EDS. If you don't fit the criteria you don't have it. You may have a hypermobility spectrum disorder though.
Agree 100%. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I just love your hair so much. It is looking so good! Are you still using henna to dye it? Please let us in on your haircare secrets soon. Thanks for all your amazing content. You are a treasure ❤
If you watch her weekend vlogs you can see her doing some of her hair care stuff.
Thank you for explaining some of these little known conditions and syndromes.
So pleasing to find your video on this topic. I know you have video’s related to many of the conditions mentioned with product recommendations, I’d appreciate a video on what treatments do/don’t work for EDS skin-such as topical Vit C, retinoids, Corsyx, Botox etc
Agree. I have had good results with vitamin C, retinoids, and botox. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I had a rather serious hand injury 2 months ago. The surgeon who put it back together in Urgent care looked at me as he was stitching and said "You've got EDS huh?" I said "Yes. I do." He laughed and said "Your skin told me." Keratosis pilaris runs in my family.
Wow, this is wild to me. I havent been on youtube for a while but i watch your content all the time! The moment I come back i notice you did this video on HEDS. I just got diagnosed with it last month. Thank you for putting this information out there! Youre a blessing.
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I am a hypermobile woman and it is inherited. I am not sure if I have the syndrome itself or just a higher grade of hypermobility than the norm. I can see some but not all of the points mentioned in my own body. I just discovered this syndrome recently. No doctor in my entire life has ever mentioned this, only my chiropractor saw that my posture is like a hypermobile person. I mention it more frequently myself on doctors visits now that I am hypermobile
It's important to find doctors that understand. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Terrific video on EDS. It would be nice if you'd address the chronic pain issues that EDS people suffer with. Also, can you please tell us what, if anything, can help our skin esp with aging... do botox or lasers or peptides or anything work for us? More importantly, are these safe for us Gumby people?
Thank you for making this video Dr Dray.
I always wonder the same thing. I personally have had good results from botox and lasers. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I have Classic h-EDS this is life saving to see this on such a huge platform.
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Thank you so much for this video. I was diagnosed with ehler danlos hypermobile type and since then it has been a challenge to learn more about its effects on all aspects of my life, this video helped a lot!
How can it be a challenge. There are sooo many videos from the experts on youtube like Ehler Danlos Syndrome society or EDS awareness
Correction my hEDS does NOT have stretchy skin, velvet like and transparent with vascular show underneath for sure. And actually Cortney Gensemer PhD at the MUSC Norris Lab has isolated the hypermobile type gene and is working on publishing it. I've submitted to this study and she herself also has hEDS. But thank you for giving a voice and awareness to us zebras as we call ourselves from the medical school saying 'when you hear hoof beats think horses and not zebras' to assume it's a common disease finding and not exotic and rare. Vitamin C also helps us because of its mast cell degranulation stabilizing affect which many are realizing is the core reason we have the problems with our connective tissues, including vascular endothelial tissues highly involved with the Covid virus. But have to say thanks for the 😂 on the kybella for my feet papules. I'll be sharing this quite informative video with my Ehlers-Danlos aware Board certified Dermatology PA. Thank you from all of us dazzle of zebras Dr
Interesting, any idea when this will be available?
Last I heard, Norris got it wrong and isn't publishing anything yet. MIA3 is published by Dr Francomano
My skin is so translucent! I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I don't know if I have EDS, all I remember it's that when I was a child I was told I was hyper elastic by Drs, but surely the muscle/joint pain since I was a kid gets unbearable in the winter, and nowadays even when I do house chores it hurts, for the last few years, even when I wear gloves, I'm def seeing a Dr again, I just hope it's not arthritis 😅
Estrogen in patch form has little to no risk of blood clots. It is tge oral form that poses the risk
Yes. Great news, too!
Thank you for this video. I thought that I had h-EDS and went to rheumatology. I saw a nurse practitioner but she completely dismissed me because I couldn’t bend my elbow enough. I tried to explain that older people may not show that sign anymore, but she wouldn’t listen. So I thought for the past few years that I didn’t have it. But now I know that I do because I have had almost all of those skin symptoms at one point in my life or another. I’m going to ask my PCP to send me to genetics and I’m going to be way more educated so that I can advocate for myself. I really appreciate your knowledge and your ability to explain it in a way that I could understand ❤
When you have POTS, hEDS, and Mast cell disorder this is known as ….”The Trifecta”….nope it doesn’t mean I won something, in fact it means that I LOST the genetic lottery
And autism ADHD I believe it's the autism causing it all
Me too! I’ve never met anyone who has all 3 like me. I’m so sorry you’re dealing with this too. ❤
Yes I like to call it "The Trifecta of fuckery" I have POTS and Hypermobile Ehelrs Danlos ans I would suspect MCAS but not diagnosed nor lpoked at
I have all three as well! Including gastroparesis 😭 definitely not fun.
@@MelismaTheEnigma mcas causes most of the illness threw the autism
We do not always have stretchy skin. I do not have stretchy skin, but my son does. I have Hypermobile EDS and my son was diagnosed with HSD.
This is the most informative video I've seen. I have so many of these symptoms except stretchy skin, but my rheumatologist doesn't want to diagnose me.
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I’ve never heard of any of this before, thanks for educating me on the subject! Have a great week! 🥰
Always wanted to know if rosacea is also more common with hEDS ?
It’s so hard to get diagnosed even when I was told by my epilepsy neurologist & dentist to try and get a diagnosis. He mentioned seizure disorders are more likely with ppl who suffer from this. Thank you so much for this video ❤
I don’t know if rosacea is more common (although I suspect it is), but I have wondered if a lot of us are misdiagnosed with rosacea when we actually have a mast cell issue. This seems to be what happened to me, although my suspected mast cell issue hasn’t been confirmed yet. And when I developed facial flushing, my derm said it could be rosacea, but she wasn’t 100% sure. So far no rosacea treatment has helped, but double doses of antihistamines has 🤷🏻♀️
I have rosacea and hEDS, both diagnosed by specialists. Blood vessels are part of our convective tissue network so it would make sense that our blood vessels are weak, leading to rosacea and other vascular skin issues such as easy bruising. More serious, and dangerous is vascular EDS and yes, seizures are common with this type.
I was born with Livedo and along with KP, Icthyosis, and the tendency for my skin to imprint from clothing (I'm very sensitive to textures and tags) I got made fun of as a kid in PE class. I'm very self conscious about my skin and tend to cover up in public. I've had good luck with using scar tape after a recent surgery (the scar is so much better) and using red LED light over my skin, the wounds heals much faster and it really helps my skin improve and behave more normally and feel less dry. I also dry brush before applying any lotion but it's tough to find products that I'm not allergic to so I mix my own body butter instead. Nettle is a Histamine inhibitor so I try to include it in my skin and hair products, it has helped with hair loss due to psoriasis that I get along my hairline and eyebrows. My insurance offers the bare minimum for treatment so I've had to get creative.
Interesting about the scar tape. I love the red light too. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Diagnosed with hEDS, PoTS and MCAS but had never heard that 2 things I've always struggled with - dyshidrotic eczema and acne - were at all related! I had brought up many of these things to doctors as the "weird stuff about my body" list grew longer, but no one ever connected the dots.
I’m always finding bruises everywhere. So thanks for this video. I feel like I need to be wrapped in bubble wrap.
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
I do just want to point out one thing that you said that needs a big caveat: steroid injections. In people with EDS they are typically contraindicated because they actually destroy some connective tissue each time they are used, so most subject matter experts say to avoid them unless absolutely necessary.
I did NOT do well with the steroids. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Thank you! I have EDS and had no idea so many of my skin issues were directly associated with it.
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Thanks so much for this. I’m 52 & have HEDS. I have many of those skin issues. I have Ideopathic Environmental Disorder which triggers my mast cells. I get that webbing whenever my mast cells are triggered. I appreciate your information. Using Nizoral shampoo has really helped my scalp bc of your videos!
I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Hi there!!! I have Classic EDS and have a lot of skin issues. SOOO happy you're talking about this! Thank you so much!! I'm so interested in knowing how i can have a better understanding of what I can do to have a better looking aging process.
That is exactly what I am interested in! I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit
Can you cover sebaceous hyperplasia. I believe I inherited this skin condition from my father. It’s not painful, but it’s not pretty either. So tired of having to use a photo filter. It makes me super self conscious. Especially with all the videos of women getting “glass” skin. Thank you so much for your informative videos.❤
I appreciate these kinds of videos so much. I have EDS,Raynauds, Sjogrens severe fibromyalgia. mast cell syndrome, chronic urticaria, rosacea on my skin, and ocular, disautonomia, small fiber, and autonomic neuropathy. I'm also looking into seeing if I have tethered cord as well. It took a very long time for me to find a team of doctors who were able to figure out my complicated conditions. It seems like a lot of these diagnoses go hand in hand with people who have EDS and disautonomia.
Is it possible that you have CIRS, and that the symptoms it's generating are in common with the conditions you listed?
Thank you for making this informative video. I just got diagnosed with hEDS this year after 16 years of going to doctors about the various symptoms. I developed a lipoma and the only option I was offered was surgery -- because I suspected I might have hEDS, I was hesitant to pursue it. Maybe Kybella could be a good alternative. I also started developing livedo reticularus this year and didn't know the term for it until this video. I've also been starting to suspect that my lifelong scalp issue could be psoriasis, so it was interesting to hear about that hEDS association!
I found out about this syndrome 1 year ago, and it was a mind-blowing fact that nobody at drs offices talks about. U keep having joint pain, especially during humid or hot temperatures, but in the winter as well. Have shoulder surgery almost 2 years ago, and its been hard to feel well. I don't have some symptoms, but my joints are very flexible. I turned my knee ca0 when l was teenager and keep giving me problems until today. What kind of doctor can check me out for this condition?
I never made the connection between why Tretinoin isn’t very effective for me and my hEDS. Thanks for this video!
I think my tretinoin is working but same, not sure. I have been a follower of Dr Dray since she started. I just started a small YT channel focusing on the unknown skin "beautification" effects of EDS. I specifically use retinoids, SPF, and vitamin C. My goal is to try aesthetic procedures and share experiences with each other because so little is known about that aspect. Feel free to join or share with anyone that you think would benefit