My Genetic Disorder (Ehlers Danlos Syndrome)
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- Опубліковано 15 жов 2024
- So...I have a genetic disorder called Ehlers-Danlos Syndrome, or EDS. I wanted to make this video because you, my lovely followers, deserve to know why I might go MIA for a few weeks occasionally. ;) So, yeah... This is why.
I also want to raise awareness for EDS, which often goes undiagnosed or misdiagnosed for years, like mine did. I am not a doctor, please do not take anything in this video as medical advice. Not everyone with EDS has all of the symptoms; some have more, some have less.
If you or a loved one has EDS, POTS, CFS, or another chronic illness, my heart goes out to you, and I would love to connect! Drop a comment!
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Ehlers Danlos Syndrome a frustrating disease. You'll spend your whole life trying to educate your doctors as to what it is, and yet even though they barely know a damned thing about it, they'll never believe a word you say when you explain half your symptoms and tell them you're in pain. They'll let you suffer and most doctors just do NOT care. It's great. Good times.
Syzygy omg I am 90% sure I have it but I tried to get diognosed and my doctor was so rubbish I hated her so much all she asked me is if I had stretchy skin I said no then she asked if I bruised easily I said yes and she wrote down no like lady I said yes for god sake then she asked if I have unusual scaring I said yes she wrote down no then she asked if I had stretch marks for no reason I said yes she wrote down no and she then said ok you don’t have Eds no more questions nothing
@@sarahharvey9783 find another Dr ASAP! Keep changing Drs until you find one that will send you to a rheumatologist or a geneticist. Don't give up! We have to be our own advocates. God bless, and prayers you get answers soon.
@@sarahharvey9783 To be fair stretch marks are a known side symptom of EDS and its entirely relevant since we get them in weird places, like on the knees, where my weirdest ones are.
@@LadyAhro What! I didn't realize that. I was just diagnosed and I have odd stretch marks on my knees. I have never had significant weight gain or body changes to warrant the stretch marks I have. I'm almost the same size at 26 as I was at 13 and grew super gradually, yet all of these stretch marks appeared, including on my knees. I never cared, but was uncertain about why. Wild!
Bored beaver
Are you serious ? OMG, how sad, totally disgusting !!
It’s so nice to see someone else sharing about EDS. I just started a channel for EDS. I’m so sorry you have go through this! Welcome to the zebra fam 🦓
Thank you so much! ❤️
Crea Perry Thank you so much to the both of you. I’m a Zebra and it’s nice I’m not alone.
Ps. I subbed to both of you ❤️
We're the Zebra family! ^^
Crea Perry I have a friend that suffers from EDS and POTS among other conditions. I have my zebra on right now!
You talking about how they don't look at the body as a whole is so true! A 15 year old shouldn't have spine and back issues. I had GI issues, I have chronic migraines, and so many unexplained pains. I've talked to some doctors, and hopefully, we can get a diagnosis.
I feel you, I'm also fifteen and have SO much body pain but no docter believe me.
Umm yes a 15 year old can, you can be born with scoliosis which causes back pain. I’m 12 and my doctors just figured out I had scoliosis a year ago, but I’ve had surgery and I’m still recovering.
A doctor just recently introduced this disorder to me. Almost all of my symptoms have been explained. Migraines, severe GI pain and motility problems, extreme joint flexibility and pain even as a kid, etc. It’s amazing knowing that there are other people like me. I’ve been convinced that I was crazy all my life. I’ve recently taken control over my health. I have always been conscientious about how I feel, but I most recently have been making sure I exercise daily. For the past several years, I have given up gluten and dairy as well. I hope this information helps anyone who may be speculating that they have this rare disorder!
I got diagnosed at 8 but no one believed me and thought i just wanted attention.
I hate the migraines!! They stink more when a new doctor become involved and off to another round of scans for brain tumors, all because the new doctor does not know the illness. It gets so frustrating, Like he/she is going to find a whole new illness, because they never heard of the one you have. It got to the point I go to none! I know what I have, I do not need more test for them to know I do not have brain tumors!
I was just diagnosed with hEDS about three weeks ago. I finally feel justified, like I’m not crazy. However, my condition is so severe that I don’t see myself being able to work, which leaves me distressed because people don’t know what EDS is and just how many symptoms you can have from it. I’m constantly absolutely exhausted, I get severe chronic migraines every week, and my anxiety is insane due to my adrenaline. No one understands how intense a life with EDS is, and I feel guilty for being so weak but it’s nothing that we can help! Thank you for this video, I feel very supported and comforted by it, and my heart goes out to you!
Yes, the nervous system constantly being on "high alert" is SO exhausting! Congratulations on receiving a diagnosis. I know how validating that is, to know that you're not crazy! Are you in any of the EDS Facebook support groups? You might find that really helpful. Connecting with others who share your struggles is important for learning coping strategies and just overall mental health.
Not all people with EDS can, but some folks with EDS can receive disability benefits and stop working. Please, if you feel like working is outside of the realm of possibility for you, talk to a doctor about beginning this process. You should not have to suffer excessively. I'm so sorry you're going through this and hope you can find some relief.
My daughter has been on disability for over 5 years, chronic migraine sufferer, epilepsy and severe pain constantly. She has been in a wheelchair for about a year and today she went to a geneticist and he believes she has hEDS and POTS. She has previously been told she is lazy and it’s all in her head, she now suffers anxiety and depression too. No treatment so no relief either. One month ago she was also diagnosed with adrenal insufficiency.
I'm almost 16 and I was diagnosed with hypermobility and vascular EDS a few years ago, and have extensive knowledge on the subject. My mom passed EDS to me and my three older siblings, but my EDS is the worst out of everyone in the family. You need to remember that ESD is a degenerative disorder and gets worse as you age. Some people progress faster than others and some people barley progress at all. My EDS likes to lay low for a year or so then rapidly get worse, then lay low again. I have to use a wheelchair at school now for my own safety because all of my heart problems, pain, and anemia. I have also started developing GI issues as well. I have a strange problem with my EDS though... I can't be in the sun because my blood vessels rupture from prolonged sun exposure. It is very interesting to try and live a normal life when you have a chronic illness I can tell you that much XD
I do have some recommendations to help take care of yourself though.
1. Try and limit the time that you are looking at computers or phones because EDS does effect the muscle and tissues in the eyes and I and many others get frequent migraines from eye strain.
2. Drink more water than you normally would, because with the POTS we tend to get dehydrated easy
3.Don't pop your joints, it can cause ulcers in the joints of someone with EDS
4.Try and keep track of how much pain you are in everyday and what level your pain is. This is so you can have an accurate representation for your doctor and you can get the best treatment
5.If you start hurting while doing something, take a break. When the joints of someone with EDS hurt, that means the joint is being damaged
6.I don't know how sensitive you are, but pay attention to how hot and cold your body is. A lot of people with EDS get very sick when exposed to unfavorable temperatures for very long. My personal safe zone is 68-75 degrees
7.keep on the look out for other conditions that are related to EDS, because they can pop up at any time.
8. Do your research, you need to know what someone with EDS should be expecting and what you should and shouldn't do when it comes to your physical therapy. Some of the exercises can cause more harm than good.
9. keep on the look out for vitamin and mineral deficiencies, people with EDS normally have trouble absorbing nutrients.
10.watch out for anxiety, it is very common in people with EDS
11.don't blow off stuff that seems small, it can be connected to something bigger happening
that is all I can think of for now, I wish my fellow Zebras luck with their EDS and the conditions that come with it
I'm so sorry you're dealing with all that at such a young age. 😢 Thank you for your excellent comment. All those tips are incredibly helpful. I will definitely keep them in mind, as I hope others will who read your comment. ❤️
@@AngelaHepp I don't really mind, this is my normal and it could always be worse :)
I forgot to do this before but welcome to the herd my fellow Zebra ^-^
Thank you so much!
Zebras are my daughter who I suspect had EDS' favorite animal lol haha how cool. Thanks for the advice.
You're so right - the doctor's all look at what their specialty is, and don't have a holistic approach to medicine.
I did diagnose myself, but my rheumatologist won't change HIS diagnosis of fibromyalgia to the EXTREMELY more likely EDS.
I finally found someone who has the name of an EDS specialist.
I've had multiple surgeries myself - for really weird things - half of my large intestines removed because they were literally, in a knot. Because the connective tissue FAILED MISERABLY.
I have odd, large scars from my double carpal tunnel surgeries and my double cubital tunnel surgeries.
I ALWAYS FEEL LIKE I NEED TO STRETCH MY WHOLE BODY.
Ugh. I'm never truly comfortable.
Thank you for making this video; it helps validate my own weird and whacky, bendy, flexing, body is not my imagination - and it's NOT fibromyalgia.
Good for you for standing up for yourself! You know your body best. Keep chasing those answers! ❤️
They need to create a community center where doctors in each category are all in one place SPECIFICALLY for disorders like EDS and POTS.
I am a nurse practitioner, and I have hypermobile EDS. I am looking at EDS videos in order to make a presentation for the doctors at my clinic. Thank you, Angie, for this informative video that even accurately discusses the mechanisms behind some of the symptoms. It is hard for you to share, but it is so, so important. Your cheerful attitude comes across, despite a lot of suffering. I know you are a warrior, and a great asset for the community of zebras.
Thank you so much! I'm so glad you enjoyed it, and THANK YOU for educating more doctors! We need that SO much! ❤️
I'm being tested for ehlers Danlos syndrome. Nice to see someone be open about having it!
Thanks for stopping by! Welcome to the herd!
What specialist test for this? How do you get tested?
@@iperalta7777 A rheumatologist would be a good choice. Perhaps rare syndrome specialists or connective tissue disease specialists could help (if you are lucky enough to have them near you). And I suppose that maybe some primary care doctors could help... not sure. I was diagnosed by a rheumatologist.
I am in tears right now because so many of the things you’ve said have been my life for the past 28 years...I can’t even reference specific parts because, well, it’s everything. I feel like we are the same person. I’ve been in and out of hospitals and doctors for years in sheer frustration. The ER says it’s “just muscle pain”, the doc says it’s in your head, etc. What prompted me to research EDS (and I do believe it’s vEDS, going in for a test soon hopefully) is when my fiancé was grossed out by what I can do with my hands lol. I always thought that was normal.
Thank you for this.
To be honest..you have a kind and compassionate heart...thanks for being honest..God bless you...and wish you luck and all the best wishes ma'am
Thank you so much!
My daughter, 17, and i both have EDS. I was diagnosed after my daughter was, after being misdiagnosed with fibromyalgia and other things for years. You might have been describing our lives in your video :) Its great that you have shared a video about it, I wish more would as its so unknown to most. Its hard to accept at first and you grieve the life that you should have had. But myself and my daughter are good about it now. We have our bad days and days we cry,of course, but we also laugh a lot about it and tease each other for looking, moving walking like "old ladies" now. All in fun. If you can't have fun and laugh, you might as well give up :)
This post makes me laugh and cry at the same time. 😊 Thank you so much. I have three kids, and I highly suspect my daughter has it as well.
Always good to be open and discuss these health issues!
Thanks!
Thank you! I have just been through the wringer of diagnosis for CFS after DECADES of being not well. And I dove deeper because that amorphous diagnosis just didn't seem "enough." My doctor asks me when the last good night sleep I had was. Have I ever had one? When was the last day I felt good? Well, one or two days a year. I assumed I was lazy because I only feel comfortable reclining. But reclined positions make my shoulders, neck, and hips ache. I get tendonitis for no reason, bruise like an overripe peach, and get papery scars when wounds actually decide they want to heal. I had a lovely D.O. suspect narcolepsy and now I know she wasn't that far off, even when I discovered the sleep lab was just a CPAP machine mill. I am so thankful that the criteria is definitely on the move for more and more answers and that millions of us can finally feel validated that this IS our normal and that we live with a constant level of pain that would bring a "regular" human to their knees. Thank you, fellow zebras, for fighting the salt-shamers, the handicap parking space disbelievers, and the strangers who laugh at us for our constant clothing layers and persistent weather complaints. I used to think I was an introvert. Now I know I am just part of the Zebra Herd.
This is so well written! I am planning to do more videos on EDS, so people like you and I won't have to go 20 or 30 or 40 years without a diagnosis. 😊
@@AngelaHepp Thank you, and, yes, please do!
I first heard about EDS from Simon and Martina and I've been researching it more to learn more about it. You did such a wonderful job explaining what living with EDS is like for you. Thank you so much for taking the time to make this!
I'm so glad you enjoyed the video. Thank you for watching!
I’m crying. I just learned this was a thing today. IT EXPLAINS SO MUCH. Going to the dr Monday to ask to be tested. I just can’t even. This makes so much sense and connects so many dots. Thank you for taking the time to make this video. My knees dislocate in my sleep all the time.
You're welcome! I hope you get the answers you're looking for. ❤️
Fellow Zebra here! And of course all the friends.... POTS, MCAS, CFS, and hemiplegic migraines..... great video! I can relate to so much of what you share here. It is hard to have to give up things you enjoy : ( And all the hindsight things.... so relatable! God bless, from a fellow traveler on this bumpy road.
This is so great! My mother has Eds and systemic lupus, and it’s very bad for her. My father has POTS (according to him it’s a “rare” type of POTS?) and just a lot of nervous system issues. It’s so horrible to hear you struggling, but your video is so nice. It’s obviously hard to watch but it’s nice to hear this from you. I’m also very glad to here that I, although have a pre-disposition for specific things, I’m not showing many symptoms. I find myself peace of mind, and as someone who’s watched someone progress I really hope you do well.
Another zebra here! I was dx last year, after nearly 50 years of frustrating dr visits and misdiagnosis, your video basically describes my life as well. Have all the fun Co morbid stuff u mention, pots, gastroparesis, mcad , scoliosis etc etc. getting dx is incredibly validating after years of drs doubting or brushing off my complaints, basically diagnosed myself over last 5 years of researching on here and meeting some amazing zebras, and finally getting a geneticist appt after a year long wait. I’ve lived in chronic pain my entire life- thought it was “normal”, can’t even imagine what it feels like to not have pain 24/7. Thank you fir making this video !
Getting that diagnosis is so validating! I'm so glad you finally found answers after all these years. I hope now you're able to receive better care and enjoy some improved quality of life. Thank you for watching and for sharing your story!
Thank you so much for sharing this. I was crying as I listened to you because I've been suffering like you my whole life. I'm 32 and now determined to get diagnosed. All my life I've been told there's nothing wrong with me. You are beautiful and incredible and strong. I'm sending you a massive hug (a virtual one because real hugging is so painful 🙄).
Thank you so much! I appreciate the hug! ♥️ Praying you find answers soon!
I related so much to this! Especially the part about reading the possible signs and symptoms of EDS and feeling like, "This is my entire life." This diagnosis has explained things I did as an infant. It's explained my "mystery" medical issues and constant fainting as a teen. It's explained my odd series of issues in my early 20s. And now it's explaining what is going on in my late 20s--symptoms so bizarre and "unrelated" that I was constantly called either a "puzzle" or a hypochondriac by doctors. I feel so fortunate to have finally received a diagnosis while I am still young so I can, to a certain extent, delay or prevent further mobility issues. Thank you so much for this video! It may be hard to be vulnerable like this, but it's tremendously helpful to watch. I hope your physical therapy helps!
Thank you so much! I'm glad you enjoyed the video. It is such a tremendous relief to finally have that diagnosis, isn't it?
@@AngelaHepp I can't even put the relief into words. After all of these years with three major times of seeing doctors frequently for "unrelated" issues, it all makes sense. It is life-changing just to know and to have the words to direct me toward support and community (like your video). Thanks for what you do!
Your story is shockingly similar to mine. Diagnosed 1 year ago with Classical EDS and Orthostatic Hypotension at age 36. Thank you for explaining it so succinctly. 🥰🥰
I have looked into this for the past month testing every single symptom on myself, and I had a LOT of them. Today I recently went to the local clinic, and with no surprise I am recommended to an orthopedist for hEDS. This is exciting for me because maybe if I get a diagnosis, the pain will die down. I am very young to be diagnosed with this, maybe too young which is a little scary, but all of the youtube people I have seen with different types, are all different ages, so I think I'll be fine. And thanks for making a new video on the internet about EDS!
I'm currently seeking a cEDS diagnosis. I'm 22 and I feel like I'm older than most people when they get diagnosed. Your story gives me hope to get a diagnosis
i've had unexplained health problems my entire life and i'm just now realizing i have every symptom of this, it ties everything together (connective tissue pun) perfectly.
Angie, I met you on the bus to the Salt Lake City Airport after the Young Living Silver Retreat a few years ago and I have followed you on and off. This video was SO fascinating! After listening, I'm quite certain that both my 88-year-old mother and I (age 64) have EDS. This explains SO much! Thank you for making this video.
You're welcome! I'm so glad you enjoyed the video. Search Facebook for "Holistic Zebras," it's a group I created for people with EDS who are interested in more natural management strategies. You're welcome to join!
I have just been diagnosed with hEDS. After having health issues since birth, it was a relief to know someone has finally connected everything. I’m 28 now. Thank you so much for sharing your story 💕🦓💕
You're most welcome! Congratulations on getting answers. :)
I'm just a teen and I've been lucky enough to be diagnosed at 11, but I feel you. Even now, I can't exercise anymore because my joints can't take it. It's tough, so it's nice to have a community like this to share.
Getting diagnosed last year explained SO much that, like you, I just took for granted. Bendy hands & feet that are now very arthritic, chronic muscle tightness, problems with shoulders (prolotherapy helped!), internal adhesions after abdominal surgery that caused terrible pain and even an ectopic pregnancy, and more. Two joint replacements, hopefully no more! One of my sons also has it, and has chronic pain. He is doubting he will have kids, which makes me sad, but I do understand (we also have other genetic problems in the family). EDS is one of those problems that is only now coming to light. Lots of people have suffered from it, undiagnosed until recently.
I'm nearly in tears listening to this. Im 29 and was just diagnosed with this. Since puberty is when i started most of my problems. I also have osteo-chondritis Dissicans which is basically the decay of the end of my bones from lack of blood flow. To hear someone else share my exact same symptoms gives me hope. I had a knee transplant from a cadaver at 27. many other knee and elbow surgeries before that. Many spinal taps and mylograms because they always thought it was my spinal pressure. i was just a little boy getting spinal taps when my friends enjoyed life, it hurt so much. Being told by every doctor im freakin crazy and my mom should take me to a therapist. Now im bound to my home most of my time. Its mostly in my (sorry if i spell wrong) intercostals or the tissue between my rips. it feels like theyre being pryed open one by one and its effecting my diaphragm. My vertibrae are unstable, they buldge in and out on their own free will causing me to black out at times. man the list could go on im sorry but this is absolutely amazing to me. Ehler's Danlos....why did it choose us or anyone fort that matter :*(
My son was diagnosed 10 years ago after going to doctors constantly for 7 years with various issues. After he was diagnosed by geneticist then my other son and myself were diagnosed. I had said for years, how can one person have so many issues from head to toe. The doctors did their best but were left with no answers. Finally the geneticist had the answer. I was not upset but thrilled to finally have a answer. You are wise to pace yourself. I, also, rarely leave the house. I have everything we need delivered. You did an excellent job explaining EDS. We also have issues with POTS and temperature regulation. Best of luck to you.
Thank you so much. I'm glad you enjoyed the video.
I got diagnosed with EDS when I was about 8 after about 3 years of medical research. I'm now 12 and basically my entire family suffers from it too so I know what you are going through. Fortunately, I got diagnosed quite young so I was able to have more time enduring physio therapy and going to the OT. It really suck having EDS because everyone thinks your just a normal person because it is invisible when on the inside your quite ill. Especially being in high school because no one believes that you actually have it and don't understand how much pain you are in constantly. I've had many joints dislocate or sublax at school but no one actually understands what I'm going through and the amount of doctors apointments are unbelieveable espeially when you have to get your heart checked (idk what its called, lol). But anyways, welcome to the zebra family xx
I just came across this after getting diagnosed a few months ago, and I am so sorry you are in so much pain but so grateful to know that it isn't just me. I have very similar neck and shoulder issues, both my right shoulder and vertebra at the base of my skull frequently go out and it's immensely frustrating. I have a very physical job and also love to work out, I always have, and it really sucks on those days where my body just won't work for me. My docs encourage me to not slow down if I can help it, since my constant physicality has kept my muscles in good enough shape to hold me together, but I'm damn scared of the day when I won't be able to beat my body into submission anymore. Thank you for making this video even though it was so hard for you and thank you for giving us space to talk about our issues ❤
You're most welcome! Thank you for watching. I'm sorry you're struggling, too, but I hope you find lots of great support to help you navigate this condition. The Muldowney Physical Therapy protocol is something you might be interested in. It's a way to stay strong and fit without further stressing your joints and injuring yourself. I took this book to my Physical Therapist and she's working through it with me: amzn.to/34CkGnC
Thanks! 😁 I just ordered it, my PT will be pleased too since I'm the only one she's had with this condition (even though she helped me get diagnosed). Thanks again!
That's great! I hope you have good success with it!
I’m just coming across your channel & just wanted to let you know that I’m praying for miracles & to let you know that I see how God is using your joy & strength in Him through your struggles & weakness to speak life into so many that are watching you here. You’re so beautiful & He must be so proud of you. 💖 It’s obvious that you find your strength in Him. 🙏
You are very perceptive, and exactly right. He is my joy and my strength, and I honestly don't know how people survive without Him. Thank you so much for watching and for your prayers! It means so much, truly. :)
Angie Hepp without* Him (for all those readers) ☺️
Funny you say perceptive! I’m an ENFP on the Myers Briggs personality type.. (Extroverted, iNtuitive, Feeling, & Perceiving).. but I’ve had a hard time understanding the perceiving part! Guess I’m doing it & don’t realize it 😁
Have you read the book called “It’s not supposed to be this way” by Lydia Terkeurst? I’ve been reading it & it’s been really showing me how God makes beauty out of our brokenness, but she went through some health struggles that you may relate to.
Putting you on my prayer board! ❤️
@@scheradee Ahhh, thanks for catching that typo! Fixed it! That's so neat about your personality! I'm enjoyed getting to know my Enneagram personality and my hubby's too. It's helped us relate and understand eachother better. I took the Meyers-Briggs years ago, but I don't remember what I was. I guess I should take it again. I have not read thatbook, but it sounds interesting! I REALLY have been blessed by Jerry Bridges' "Trusting God Even When Life Hurts," and "Heaven" by Randy Alcorn. Thank you for the prayers!!
Thank you sooo much for your candid explanation for this not fun disorder! I was diagnosed with EDS-HT about two months ago but like you have had issues with my tissues all my life. I look at each day knowing it’s the grace of God go I. If you have time, I’d love to connect with you! ❤️
Hi Rachel! Absolutely! Come say hi on Instagram instagram.com/hope_essentials! ❤️
Hi! Great video. I just found you tonight and was so shocked to see how identical our stories are so similar even down to not shopping or driving anymore. I am so honestly relieved as of today 5/7 I have a true diagnosis for what drs couldn’t figure out but told me was fibromyalgia is now EDS. It’s such a wonderful feeling and peace to know your not crazy and can have validation. I hope your PT does well and I will be enjoying many more of your videos. :)
I'm so happy to hear you received a diagnosis. It does help so much to put a name to the beast. Unfortunately, after a couple months of therapy, I'm seeing zero improvement, so my PT wants me to see a specialist - suspects a labral tear. Ugh.
Angie Hepp well thank you. It is wonderful to finally have the correct diagnosis. I am so sorry to hear your PT isn’t working. I did PT 8 months ago for about 3 months and had more pain than started, but will be optimistic as they didn’t know how to tailor my treatment accordingly. I sure hope you feel better soon and they can get you out of pain and feel better and no surgery!
That was really nice to open up. Thank you. I'm a medical student and when I watched this video... It helped me a lot and thought me about your feelings about the symptoms and signs as well as your personal feelings. Hope you stay healthy and radiant like you are always.. thanks again! You made it more simple and nice that when I saw all the other comments... I was happy( not for the pain you're undergoing) but I get the idea of how many people and suffering from and got properly diagnosed and are aware of their condition.
This makes me so happy! We need more physicians who are aware of these conditions. I hope you go on to study more about them so you can be a resource for this very neglected community. 😊 Thank you for watching!
Thank you so much for this video. I have just started the diagnostic process after a lifetime of hEDS symptoms and 5 years of severe POTS symptoms. You do a great job explaining the condition. Still a bit apprehensive about the diagnosis at the moment.
You're welcome. I hope you find answers soon!
I’m 15 and was just diagnosed with hEDS this morning by a geneticist. You’re video really helped me understand a lot better
I can relate soooo much. I also have EDS. Getting my diagnosis was a total game changer. Thank you for sharing this.
Thank you for sharing your story. I was diagnosed just a few weeks ago. I think you're very brave sharing your story. I'm still coming to terms with my diagnosis but at 41 years old it is good to finally have an answer to all those questions surrounding my health.
Congratulations on finally getting answers. I'm glad you found the video helpful. 😊
Thank you for such an informative video, the way you explain things makes everything much easier to understand!
I've recently been diagnosed with POTs and am now researching EDS
I went to the doctor today for my joint pain/instability and luxing hip, and after a checkup and some tests she referred me to a specialist, because she suspected I have EDS (probably hypermobile type). I suspected it myself, but from what I’d heard from other people, getting a doctor who knows about it is quite rare. It took 45 minutes and I’m one step closer to getting a diagnosis and physical therapy to help me.
Excellent presentation. I was happy to hear you explain why our muscles take over to hold our joints together. I try to explain why I'm so exhausted all the time. I can never explain my issues right. Well done! 🤗💕
I'm so glad it was helpful! Thanks so much for watching!
Thanks for doing this. I have EDS - not severe so I'm lucky- but I didn't realise about the blood pressure drop thing when standing was a symptom. Check :-) I get that in the heat more. Don't know if this helps but I was diagnosed over 10 years ago and have done pilates twice a week ever since and it really helped stabilise my hips which were forever popping out. x
One thing I've learned about EDS is that each case is different and you will have different functionality at different times in your life. My EDS doesn't look like other people's and there are many subtypes. My main problems are my hips and knees and my GI and pelvic muscles and prolapsed organs. My shoulders are not great, but are not like Angie's. I was provisionally diagnosed by a rheumatologist. I was formally diagnosed by a geneticist. I think many people are diagnosed by geneticists. There are very very few rheumatologists who know much about EDS. The doctors who specialize in EDS tend to be cardiac surgeons or pediatric specialists--addressing the more dangerous and way more rare vascular type. I learned more from my physical therapist who has worked with many EDS clients than I have from any doctor except the geneticist. Even after I had a diagnosis a new doctor told me I didn't have EDS without even examining me. I did not see him again and I wrote a letter to the head of the practice. Doctors tend to be dismissive of women in general. I recently went to a talk and two women with EDS who were repeatedly told they didn't have it and they didn't need to see a specialist--learned to ask the doctor to write down in their medical record that the doctor refused the patient's requests to see a specialist. At that point they got their referrals because no doctor would write down they refused care to a patient on the record.
Another problem is that there is no known genetic marker for hypermobility type EDS, which is the most common. They're working to identify it, but haven't found it yet. I spent my life going to doctors and going through many diagnostic tests with no conclusive diagnoses. Many conditions they diagnosed me with have no known cause. EDS explains most, but not all of them.
If you think you have it--educate yourself on all the criteria. Doctors will tell you you don't have it because it's so rare. It is rare (maybe 50 - 150 people out of 1 million) and being hypermobile doesn't mean you have EDS. You can be hypermobile and have pain and not have EDS. EDS involves significant problems with other things like your circulatory system, GI, and uro/gyno, and your mouth. There's information and some resources at www.ehlers-danlos.com/what-is-eds/ There are other syndromes like Marfan's and Loeys-dietz that have overlapping symptoms.
Thank you for sharing your story! I have many of the comorbidities, and I plan on doing more videos about that.
@@AngelaHepp I feel like mine are super weird, but everyone probably feels that way?
Fellow Eds zebra here. Welcome to the fam
Thank you!
@@AngelaHepp Welcome!
Yes. My ligaments and tendons are f*cked. I’ve known I’ve had it for a long time, but I still have trouble feeling like people understand at all. I wish people in my life (including doctors) could just take in some of this information.This video is informative and well put together! Glad you got your diagnosis. You have a great grasp on how it affects the body.
My doctor suspects I may have EDS due to the issues I'm having with mainly my hip but some of my other joints also have issues. He wanted me to do more research and the more I look, the more I see some of the same issues I have. It honestly is very overwhelming. Thank you so much for the video!
Thank you for putting this out there. You are right on the money! I have 4 different Orthopedic appts next week because each has their “specialty”. I was feeling upset because I just want someone to figure me out. I think you helped just by sharing your experience. Thank you!
I'm so glad you enjoyed the video! Yes, connecting with others in the chronic illness community can be a lifesaver. I'll be filming another video as soon as I have enough spoons! 😄
I started having issues around the age of 15 where I noticed my hips would pop every time I would take a step. Later on this pop would be an increasingly high sublux to the point of dislocation at times. I started going to physical therapy at around 17 where my physical therapist initially thought that my hip was caused by EDS. I then went to an orthopedic surgeon and found out that my labrum, connective tissue that holds the femur in the pelvis, was torn. A hip labrum tear only occurs in trauma to the hip and or just a genetic malformation, neither of which I have had. But as of today I have hyper elastic skin, hyper flexibility of my elbows and hyper extension of my knees, my hips and shoulders pop, severe scoliosis, and the chronic light headedness from getting out of seat. My legs begin to go numb to the point of feeling like I don’t even have legs if I sit too long. I’m going to my first geneticist appointment today but your video really solidified my thoughts on the matter. Thank you so much for making an educational video!
EDS is quite frustrating! Mine became pretty symptomatic about 2 years ago when i started dislocating knees a lot. I was diagnosed at 8 though, so physio and OT was started early. I really appreciate you being open about your EDS- it isn’t really widely known.
My advice-
know and listen to your body and take even the smallest things. EDS is a puzzle and every piece you can get will help you manage! xx
I'm so sorry you're going through this, too, but thankful you got a diagnosis early. Thanks for the tips! Merry Christmas!
I was just diagnosed with hEDS about a couple weeks ago FINALLY. I'm 32. I've actually been asking doctors for a few years now about whether or not I have it because I learned about it doing research on POTS (diagnosed with that about 7 years ago I think). All my life they've been telling me it's all in my head and now I finally have an answer. Hearing someone else talk about this makes me feel less alone. I don't remember the last time I slept through the night or woke up without any pain.
Same! Same here! Hip replacement?! so young. My surgeons wont touch me. they said any replacements (i need shoulder and elbow surgeries/replacements). Good for you & education and going for the diag. I feel you....Entire life and its a literal Ah ha! moment. Careful with PT, It helped my bad shoulder but I ended up with more wrist and elbow problems. ♡ thank you for this video.
lol i never said what i was going to. Okay so I was told my only option for my shoulders was to have them pinned in place. Basically cut them off. I wouldnt be able to use them. They said any other surgery, cadaver parts, artificial joints, etc...all will eventually get lax again in about 5 - 10 years requiring more surgeries until its impossible to fix at all. I wish i could find a doctor educated in this that can help me get to where I need to go and not to a billion doctors that disagree with eachother and just throw medications at me. here take this, it will fix you take that your rls will be fine, Just dont stand like that. My favorite was my GP looking at me dead in the face and telling me at 31, You have very little quality of life and it will only be a matter of time before you dont have any quality at all. Ive since fired her. Im still sad I paid $70 in copays and fees just to have her read wiki and say that to me. She told me to go see a doctor who had eds. Im baffled as to how she could be such a...well...b*tch. its my LIFE. Could have at least referred me to someone who would actually help me instead of yell down the hall as im leaving "its not like youre dying...you arent dying".
Thankfully, I found a PT who is familiar with EDS and very careful not to stress my body. However, after a couple months of therapy, I'm seeing zero improvement, so she wants me to see a specialist - suspects a labral tear. Ugh.
@@AngelaHepp Good Luck to you. I hope no tear and props to having an educated PT! I hope soon more doctors will be educated with eds.
When you finally get diagnosed it’s such an “ah-ha!” moment. I also didn’t know it wasn’t normal to always be in pain.
Angie Hepp thank you so much I've learned I had this condition for 3 years but until now I had no idea how much of my difficulties it contributes to
Thank you for sharing about EDS. My alumni has EDS and i would love to know more so i can help her cope with her pain. Would love to interact and get more answers. You are a powerful and inspiring woman!
Thank you so much for watching! I'm glad you enjoyed the video. 😊
Excellent vid for a relative "newbie" to this only 1 point to mention is re POTS criteria it's purely on heart rate, most BP is mostly normal level, rest either BP can go low but also high, lowest % rises called Hyperadrenergic POTS (if I've remembered spelling) also some have MCAS (Mast Cells can be involved, flushing etc). Misinformation not your fault as there's still outdated info out there saying this. Side note to mention learnt in last few yrs POTS symptoms can also match/mask some symptoms of CSF leaks of the dura as the chances is increased with Connective Tissue Disorders. It's worth knowing this just incase, as it can be fixed. PS I also love the saying of "Can't connect the issues think Connective Tissues" think all GP's should have poster of this in office, it's by a EDS Dr sorry brain fog (another big EDS prob) means I'm not certain who so won't say incase wrong lol. 😉👍
Thanks so much for this...I was diagnosed Friday (at 41) and you gave me a great way to take what my geneticist told me and translate it to Words my family will understand.
How is physical therapy going? Hope it’s helping with pain. Would love to chat sometime when you are feeling up to it 😊
Congratulations on your diagnosis. I know that sounds strange, because who wants this, right? But for most people who have been struggling their whole life, receiving a diagnosis is incredibly validating and a way to prove to yourself and others that it's not "all in your head." Best wishes to you as you move forward. Physical therapy hasn't helped with my pain yet, but I'm not giving up. :)
You are just amazing. I earned so much in this few minutes. . What a great teacher you could be
Thank you so much. I'm glad you enjoyed the video. 😊
I also have this and i fought until i was 23 to get diagnosed. Even with this diagnosis i am under around 12 different departments sadly. I share your pain not just physically its took years just to get my POTS under some sort of control. I hate everything it brings and like you say thinking about every movement. I don't tell anyone the whole story of what goes on day to day. Sending gentle hugs and hope you're as well as can be 😘
Thank you so much. I'm sorry you're going through this, too, but I'm thankful we zebras have a community of support online. Stay strong!
i cried watching this. i got diagnosed yesterday, and i've been watching so many videos about it. so much of my life now is making sense, hearing stories similar to mine (especially the not thinking about it, just having it be "normal" then realizing it isn't)
Welcome to the zebra dazzle!
Hiya angie.. Just came across your vlog.. I have eds too.. You have explained it so well.. Thank you.. I am going to show my friends and family this to help them understand it better.. X
I just found out that I have EDS. I'm a bit emotional watching this because no one really understands how painful (physically) its is to have EDS. I was also misdiagnose with Marfan syndrome. Thank you for this video, I felt that I'm not alone. :)
They suspected Marfans with me, too, but when they ruled that out, they never pursued any other diagnosis. I was left to suffer, confused and guilty, feeling like I was just "weak," for ten more years. I'm so thankful for the diagnosis, because even though there is no cure, at least I'm able to connect with others who have the same thing and not feel so alone, like you said. Welcome to the "dazzle." :)
I was diagnosed with Ehlers-Danlos a little under a year ago-- I have a whole list of problems too, and I totally you're feeling. I did karate for 14 years, and I've had to give that up as well... My whole knee cap blew out while training. Tears in mcl and acl, part of my knee cap disintegrated.. I wish you the best of luck with your EDS, and would love to connect with you personally to establish support ❤️
Thanks for watching! I'm sorry you're struggling with EDS, too, but you're welcome to connect with me on Instagram. I post a lot more over there, especially in my stories. Www.instagram.com/hope_essentials
As I'm typing this my knee is totally messed up. My right shoulder is always lax and my left one isn't far behind. I also wake up every day in pain. I have to pee constantly lol. CONSTANTLY. I'm in physical therapy and I hope it helps soon. I was diagnosed with hEDS in February. You seem like you are motivated to get strong like me, we can do this 💪
I also cannot shop and have to be extremely careful with my shoulder. If PT doesn't work for me, I may need surgery. Ugh I am really hoping to avoid that. Congrats on opening up and sharing!
Hey there, so, in the past 24 hours I've been realizing that I match up to every EDS symptom... Just, thank you for making this video
Did you check out the 2017 Ehlers-Danlos Diagnostic Criteria pdf online?
Hi! Thanks for sharing all this great info about EDS. I noticed that you mentioned having to give up gardening completely due to pain, have you considering speaking with an occupational therapist (OT)? If it is something that is super meaningful to you, they can teach you less painful strategies for gardening or different techniques you can use to still be able to garden. You may have heard of it before, but just some food for thought! I'm an OT student and am watching your video to learn more about EDS, so your gardening comment rang a few of my bells! Thanks for the video!
Thank you! I've been in PT for a few months, but I have POTS as well, which often makes me too weak to even do my exercises or other things. Thank you for the suggestion, though! If I can get stronger, I will definitely consider it!
I never thought I was hypermobile or had EDS but I am teary-eyed watching this wondering if this could finally be the answer to all my health issues. As a one week old infant my mom had me in Drs offices for digestive issues. I've suffered my whole life with issues which came with IBS and gastroparesis diagnoses in my 20's. My PT told me I'm hypermobile 2 months ago - that was news to me - I am flexible but not a contortionist so I never thought of myself that way. My hips pop out of place, as do my ribs. I can put my hips back but not my ribs. My jaw has been jumping off track and getting stuck open with a painful popping back in since I was 13. I have a score of 7 on the beighton scale at age 39. I wake every morning in pain. I've blacked out all my life upon standing (but I don't believe it's POTS but rather severely low blood pressure - my normal is 70/40). My joints ache. I did a side plank 5 weeks ago and still have excruciating pain in that elbow joint. I suffer from tension migraines. I have anxiety. All these things I'm told are symptoms of EDS yet I've never had surgery on joints. Most stories I hear are of debilitating symptoms. Yes, I've suffered from fatigue as long as I can remember. The Drs just accused me of being pregnant as a teen because they couldn't explain why I was so fatigued all the time (btw, wasn't pregnant as a teen ever). I'm not sure I want to waste time and money for a diagnosis that may not be there. Someone said all hypermobility is EDS but I've seen conflicting statements concerning that. There are multiple prolapse issues among family members along with degenerative disc disease and most of us have heart murmurs or conditions (I have a slight murmur). I also have excruciating pain when I sit for too long. There's more to this list but wondering if this is enough evidence that I should go see a Dr to find out if it is EDS or not. I have a functional Dr I see. So far, I've just been binge watching videos. I'm too grossed out to check the skin elasticity on myself but I do have soft skin and very large and visible veins, especially in the winter when I'm pale. Anyway. Thanks for sharing your story! It's helping me in my decision to ask the Dr to check me. I'm just embarrassed to.
Don't be embarrassed. 😊 It's nothing to be embarrassed about or ashamed of. I suggest you Google the "2017 Ehlers-Danlos Diagnostic Criteria," print out the pdf checklist and bring it with you to your next appointment. Any doctor can make a clinical diagnosis based on that specific criteria. Best wishes as you move forward!
Just ask I have been in pain since the age of 4 and no one believes me but now a new doctor thinks I have EDS
Just so you know, I was recently diagnosed with Eds and pots, and low blood pressure is an indicator of pots. With pots, when you stand the blood pools down towards your feet causing a quick drop in blood pressure, and your heart rate goes up in a (rather vain) attempt to correct your blood pressure drop. Some people just get mild dizziness while more serve cases pass out when standing too quickly.
I just got my diagnosis after a few years of testing and being told things like I'm clumsy and stuff like that because the doctors wouldn't listen but since my diagnosis I have been able to get painkillers to help me be able to actually sleep and no longer have to write in school due to pain I now type which helps alot, its hard I even go lightheaded standing up not to mention the constant pain and the physio therapy to try help I've broken both my ancles twice and have to continuously wear supports to help me walk some days I can't even walk because I'm in so much pain .... Its because of people like you that help people like me get diagnosed and find people that have experienced the same things as me and can understand its hard because other people don't understand what's it's like to constantly be in pain and dislocate joints when you move to quick and things like that.... Thanks for being here to rant to a little I appreciate you :]]]]
Welcome! I'm glad you got a diagnosis. Not glad you have EDS, but glad for answers!
Hi, I was diagnosed with Eds when I was like 5 or 6 years, old, and this is my story. When I was first diagnosed with Eds, I was in the final semester of the first grade. In second grade, I was in a wheelchair for most of the school year, the same with third and fourth grades. My dad abused me and said that I was faking it to get attention the whole time, but even though the doctors said it was all true amdnthat I did have it, he still didn't believe me. One of my doctors, when she saw what was happening, she dedicated most of her career to researching this connective tissue disorder, I had to undergo physical therapy, and make weekly visits to the doctors office. In the sixth grade, I was bullied a lot because of it, I had to go to the hospital one time, becayse my leg got dislocated. But, with the help of the doctors, and support from my family and friends, I was able to endure and overcome, and now, eds is way less severe. So, to all my fellow zebras, stay strong.
Thank you for that video! I’m a lot overwhelmed right now! Great explanation... I’m 55 and just heard of this as my daughter was diagnosed-so I’m going next month to get officially diagnosed... I’m a nurse too! Anyway.. 🙏🏻💜💕
You're welcome! I hope all goes well with your upcoming appointment!
OMG, I’m so sorry, awful disease !! Thank you for sharing !! May GOD bless & keep you Angie !!
Thank you so much for your kind words. Blessings to you! ❤️
Goddess bless you for sharing your story. I'm on Day 5 in bed recovering from latest flare. Had ankle surgery in January to deal with destroyed cartilage, then developed tibial tendonitis and stress fracture when I started walking again. All while working full time in healthcare during COVID 19. The stories we have to tell.....but it helps to know we are not alone on this journey.
My girlfriend Alexa Marie Simmons had this disability that you are talking about and she died at the age of 22 in 2011 and I want it say thank you for bringing light to this disability
😭😭 I too have EDS. Was diagnosed last year by the Toronto EDS clinic downtown.
I have the arm-numbing problem too! Always put it down to my weight, and a pinched nerve. Now I'm starting to wonder if it's to do with the EDS.
I'll have to talk to my GP next week sometime.
Hope you are feeling well this week. Happy Easter!
Thank you for commenting! My arm is so loose on the joint that it comes partway out all the time, and when it does, it pulls on the nerve. So if your shoulder is loose/unstable, that may be contributing to the problem. Have you tried prolotherapy? I am trying it now, to hopefully tighten the ligaments in my loose shoulder. I've had two treatments so far, and haven't noticed any improvement yet, but I haven't given up hope!
For the people who dislike this video: You Mad Lads!
It's so funny because looking back at the age of 12 the first thing I was doing was waking up, popping subluxed joints back in place, trying not to faint in the middle of the day, and having to pop painkillers and Tums ever two seconds. My pediatrician said it was because of my swim schedule and school and everything would get better the older I got... Well 5 surgeries later and I don't even know how many minor procedures and chronic migraines later.... It's worse at age 30 and I'm still technically waiting for an official diagnosis! Some days the pain is just unbearable and honestly tonight is one. Thank you so much for your video and putting your own story out there ❤️
Crazy how it all makes sense in hindsight, huh? When I was diagnosed, it was like all the pieces of the puzzle coming together. 😊
I am being tested for it now. What you said about bodies being tired and sore from trying to literally keep it all together made so much sense to me..
I know this video wasn’t easy for you to make, but I really appreciate it. It is validation that it isn’t all in my head, and my pain experiences are real, valid and most importantly have a reason why things are the way that they are.
Can I ask aside from pjs all therapy, what is treatment for the pain and spasms? I am allergic to NSAIDS so needless to say I have a lot of it.
Thanks so much! 🙏🏻💕
I'm so glad you enjoyed the video. I hope you find answers soon! ❤️ Aside from physical therapy, what's helped me the most with just symptom relief are my heating pad, kratom, rest, and the CBD, essential oils, muscle rubs, and pain cream from www.hopeessentials.org. I use all of those daily, and although they don't take away the pain, they do help keep me from having to resort to opioids. I have them for emergencies, but I try not to use them whenever I can.
My physical therapist thinks I’m a poster child for EDS. I can relate to so much of this....our heart is in homesteading and gardening too, I’m so sorry you’ve had to give so much up!
Thank you for sharing.💕
I’m wondering where to start for a diagnosis.
I'm so sorry you're going through this, too. To pursue a diagnosis, the first step (in my non-professional opinion) is to Google the 2017 Ehlers-Danlos Diagnostic Criteria and print out the pdf checklist. Take it with you to your next doctor's appointment and go down the list. Then go from there if they think genetic testing is appropriate, or sometimes a clinical diagnosis of hEDS is sufficient.
Thank you so much! I have a postpartum follow up next week (who knew bladder prolapse was EDS related ??)
My OBGYN has a functional medicine practice on the side, so I’m praying hard she will be open and listen. I’m so glad the PT picked up on it, so it’s not my idea lol. Tired of being coined a hypochondriac ....
I was diagnosed with EDS 30 years ago and I learnt a few things from watching your video so thanks. I had the numbness in my arm at night as well as the cranky neck from turning over. Try sleeping on your back without a pillow. It really helped me.
I've tried that, but unfortunately my Restless Leg Syndrome is worst when I lay on my back, so in order to sleep, I have to take my cannabis tincture and sleep on my side. I would love to be able to sleep on my back, though!
I am hyper mobile and can do almost all those movements. But I don't have this diagnose and no pains or any problems. I feel pretty lucky about that. Sorry that you have to go through all of this. I think it's really good that you tell about this. It may help people who are going through this but don't know what is going on to understand.
Hi Angie.. I’m 37 and was only diagnosed in September 2018, after suffering my whole life with various issues. My little boy who’s 6 has also been diagnosed. The community is amazing. So here is my hello to you my fellow zebra, all the way in the U.K x
Hello Karla! Thank you so much for saying hello! I'm so thankful you found answers, but sorry it took so long. You are right, the community is amazing! 😄
I just got diagnosed with Hypermobile EDS yesterday and have been diagnosed with P.O.T.S for about a year now and i never knew they both can go hand and hand. Im new to EDS and so im trying to educate myself on it. While watching i realised a few spots ive had joint pain i forgot to tell my doctor so ill have bring that up next time. I also check off on most of the symptoms ive seen. Hopefully i can learn more! Thank you for the video it really helped! ❤
You're welcome! I'm so glad you enjoyed the video and that it is helping you get answers. That's the whole reason I made it!
Hey thanks for sharing this. This is my second video I'm seeing from you; the first is the one where you were dislocating your arm 9 years ago in front of your family at the dinner table. I saw it after watching some "fixing dislocated finger" videos and then the one at the dinner table popped up. It's really tough that you're going through this. I don't mean to sound cheap and unhelpful but keep up the fight and I hope this goes away 😎✊🏽 Also I didn't think I'd be watching this after the dinner table one but I was like hey why not and I also didn't think I'd be subscribing from watching random dislocated finger videos but hey I did and it worked out haha 😄😄😄😄😄 You got you a new subscriber haha 😄😄😄😄😄😄 Stay safe and I hope you and the family are doing well 😃😃😃😃😃😃😃😃
Well, however you got here, I'm glad you're here! Welcome, and thanks for the support! ❤️
I’m struggling with so many similar symptoms. I’ve had multiple MRIs and been to so many doctors but people just keep telling me to work out and rest. I feel like theres more wrong and no one will diagnose me with SOMETHING. my main problem is my knees. My knees will just give out and collapse and i’ll feel my knee cap slip out all the time. Even when I sit still and I shift, it will slip out. Because of that my MCL and ACL’s are constantly strained. I’m 25 and I feel like I can’t do anything in life anymore. I feel so lost.
Check out the 2017 Ehlers-Danlos Diagnostic Criteria and see if you fit?
I have to wear knee braces when I'm not in a wheelchair, they really help keep stability in my legs and knees :) You should try it some time it feels amazing
It's great to see more awareness happening.
I laughed when you said "it was like my life". I thought and said the same thing. 😂
I did not even clue in to my EDS until a mental health professional stated that I had an extraordinary amount of medical issues going on. When we clued in on the issues, the diagnosis was rather cut and dry.
Yep. It's often the case that a fairly young person has issues with nearly every body system, so there has to be an underlying cause that ties them all together.
Sorry, so many messages. I got a surgery that really helped, not fixed, but helped numb lower arm and last 3 fingers. Ulna-nerve transposition.
Hi Angie, I'm from Argentina, recently diagnosed with EDS, and I found your video very inspiring and would love to make spanish subtitles to share with my doctors, and people who are not aware of this diasease but the link you put on your description wont able me to contribute to this videos, it shows me others videos of yours but no this one, if you can help me because i found this video the most asertive and that describes the syndrome perfectly, excuse me my english, hope you are doing well xx
I would love for you to contribute subtitles! I will try to get to my desktop computer when I'm able and see if I can change some settings so you can contribute. 😊
My back is so weak I couldn't do daily activities properly but when I explain this to people they just laugh it out
Thankyou For Explaining This. My Friend Sia Furler Just Found Out She Has It. Hopefully This Will Raise Awareness. Thanks Again. Feel Better.
Thank you for your explanation of EDS. It will be shared with family and friends for them to better understand what my 16 year old daughter deals with daily.
I'm so glad you found it helpful. 😊
I have EDS in my arms, and I got it form my mom. It did limit me in my dancing career, but I’m still one of the top dancers in my class.
Great video! Thank you so much! I was just recently diagnosed with hEDS age 37!!
You're welcome! I'm glad it was helpful.
I saw your the behind-the-back praying hands and it had me surprised by the hypermobility but then I tried it and I could do it as well. Now I'm thinking that I've been missing out on that "party trick" my whole life! 😂 For real though I really appreciate your making this video!
I'm dealing with a csf leak right now. Ugh Ehlers Danlos is a full time job lately. 😖I need a break.
CSF leak, ugh. I'm sorry. Yep, it always seems like there's something new, huh? I'm currently dealing with a whole slew of new diagnoses: SMAS, MALS, NCS, TOS, ugh.
Your GP is the one who looks at your issues as a whole - at least in continental Europe with general healthcare (not UK and IE)
Angie it is so good to find you!! I have EDS and high miopía. My myopia has increased has the bates method helped you with your eyesight? I have scoliosis. I was diagnosed just last week.
Hello! Welcome! I switched from the Bates Method to the Reduced Lens Method and that's given me better results. I have a whole playlist on my Natural Vision Improvement journey. 😊 Enjoy!
I've been trying to get a proper diagnosis for four months now. I've seen orthopedic doctors, physicians, a rheumatologist and several other doctors and they refuse to give me a diagnosis because they say it "wont change anything". The rheumatologist said that I am hypermobile but wont look in to hEDS and it's super frustrating. My shoulders pop out about 10 times a day, my hip and ribs sublux at least 4 times a day and I see a chiropractor every 3 days. I suffer from all the hyper mobile type symptoms and severe nerve pain in my hands and arms. Please tell me which kind of doctor helped diagnose you because I need a working diagnosis so that I can get medical help.
Do a Google search for the "2017 Ehlers-Danlos Diagnostic Criteria checklist" and print it out and bring it with you to your next appointment. Any doctor can make a diagnosis of hEDS, because it is currently based on clinical criteria only (since the gene hasn't been identified yet.)