Kristin Means - Life With EDS
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- Опубліковано 24 тра 2011
- Kristin Means describes the devastating impact of Ehlers-Danlos Syndrome, EDS on her life and the signs and symptoms of a this hidden illness. Kristin address, in a heartfelt plea to unsuspecting parents to be conscious of their children's wellness.
To find more information regarding EDS go to: WWW. EDNF.ORG
My daughter was diagnosed two weeks ago with EDS. She called me and and said, "I think you have this Mom." I had heard the name and knew it was inherited. I started to research EDS and just began to cry. It was as if my whole life was written on these websites. Every thing that was wrong with me from the time I was young is listed in these websites. I am getting tested next week.
It's terrifying how many people have never heard of EDS.
My dad is a doctor. He diagnosed me and then I went to John’s Hopkins to confirm the diagnoses. My dad has been trying to get the word out there that EDS is much more common than people believe. Great talk.
spent my whole life being told it was growing pains and in my head. i would scream and cry as a child because of the pain.
how is it growing pains as an adult. how is it in your head when your knees dislocate and you've had so much pain your entire life.
how is it in your head when you're walking across the yard and you fall flat on your back because your joints gave out. this is at 16/17/18--+ years old.
I am not an old lady, but I surely walk and fall like one!!! Many of my family members do.
I JUST found out about Ehlers Danlos Syndrome because my sister and aunt were recently diagnosed.
I had a sudden HORRIBLE stomach issue where I went from a solid 160 pounds to at my lowest 100 pounds.
Could NOT eat for the massive issues with agonizing pain whenever any food went down.
I did not eat, I was like an anorexic person. My hair falling out, weak, so weak.
In the end, I was told it was "STRESS".
I was prescribed an anti-depressant type pill and that was that.
No, that "wasn't that".
Two-ish years I struggled to eat and gain weight. That pill did nothing but numb me to my suffering. All the stomach pills, they did not help.
My stomach has had issues my entire life. This last one, the worst one, nearly killed me. I KNOW I nearly died. You cannot starve for years and expect to live a long life.
There are so many things I thought was normal, or "just me", that now that I've started to write them down for my doctor, I can't help but laugh at myself. I am an idiot for not realizing these issues are not normal.
Fibro has been widely diagnosed in my family. This was before the EDS. Is it fibro, or is it EDS? Is it both? Who knows!
Everything from my heart, to my pregnancy, to my toes hurting for no reason.
My little boy has seen his first geneticist and now goes to an endocrinologist next.
I am next. Talking to my doctor ASAP to get answers.
Please, talk to your doctor, just like this lady says, people!
Pets plus EDS very fortunate to have a Dad that is a doctor !
@@zeynand4039 this is actually part of diagnosis now. Her marvelous presentation 10 years ago. I am dealing with it and other gastric issues.
I bought a RV to travel the country and see doctors published in the disease. I have a friend who's an anesthesiologist in Portland and he has it. My physical therapist in Charleston has it. I relocated to DC for the Hopkins Potts clinic. I'm not doing better but I did have a neurosurgery last year and I am independent and I would love to know where you are at and come visit you. I also have a service dog who's have been on airplanes And hospital with me before flying affected my CSF pressures too much.
My daughter's name is Kaitlynn and she has pnh but I believe she also has EDS because I'm and my twin brother have it. His is for worse than mine but then I have Sjogren's syndrome.
I wanted to spell her name like yours, for the Irish in my family, Caitlin, but my husband's middle name is Lynn and he wanted the "K" for his Welsh side. Lol
I was 37 when I finally got diagnosed with hEDS, Cranialcervical Instability, Mast Cell Activation Syndrome and PoTS, which was just last fall. It took us hiring out of pocket a private concierge doctor who sat down and listened to my entire story and life. Then I received the confirmation I’ve been looking for for decades. It changed everything.
*everything that made me me was gone *
going through that right now.
me too. This story is so similar to mine.
Going through it now myself. Hugs to you all ❤
Kassondra Ola same
I can feel this woman's pain as she is talking. I feel for her. I have chronic pain and two young children. I can but also cannot imagine what she is going through but I admire her courage and strength.
Great presentation .
Please remember to pace yourself.
EDS people overcompensate to try to feel normal (because we look normal )and can wear ourselves out.
EDS will morph and the symptoms that are most problematic today will give way (as we adapt ) to new issues that will floor us tomorrow. So overworking today will put more stress and wear on our bodies in the future. EDS is a 15 round boxing match, we need to save some of our superpowers for later rounds.
Definitely need to hear this and remember this. I am putting off getting help but I need it for sure.
I need to remember this, all I want is to be able to be a normal 20 year old with my friends. I have to keep that brake pedal ready and I don’t use it enough
Excellent advice but hard to establish. The spirit and mind are willing but the body betrays. But yes, pace with grace. Real life does not work that way. Some things are worth the aftermath but not all
This!!!! Learned to rest finally.
42 years ago I too was dxd with Growing pains. So I learnt to push the pain away because no one believed me when I said I was hurting.
I just don't understand why those 9 people do not like the video.This could be the best video that I have ever watched in youtube ,thanks I learned a lot.
Maybe there really LOVE this video and wishing THEY could walk a mile in our shoes PLUS they're too stupid
and are mean trolls who don't get that a dislike doesn't mean you don't like having this horrible dreadful disease!
And thats why they gave a thumbs down/dislike!....grrrrr...but really, a dislike vote is better than NO vote!
Thank you so much for sharing this incredibly accurate description of what life with EDS feels like. I have been misdiagnosed for so long (40 years!), accused of being a drug addict by the few, most ignorant doctors who just didn't know what else to say or do. And who didn't bother to take the time to figure it out. One great doctor in Central Oregon (Dr. Philip Wallace) finally figured out what is going on. It's been such a struggle after so many years, guesses, procedures, experiments, surgeries, etc. At least more people and doctors are finally learning about this condition and that we aren't all simply crazy. Let's hang in there and keep up with this fight. God knows, we've got to be some of the strongest people trying to survive in the face of extreme hardship, pain and doubt. Band together and we can only get stronger! Sincerely, -Bill.
Can I ask what doctor Wallace is doing for your pain? I have a ton of medication allergies and the only med combo that has worked has been norco and lyrica but the current opioid epidemic has completely left me bed ridden and I’m currently trying to find a doctor who understands how painful it can be and won’t let me suffer as my current doctor said there’s no more option because there’s “no longer going to be opiates and suboxone doesn’t work for you you allergic to codine morphine NSAIDs lidocaine patches and anything with adhesive so take the suboxone and go to physical therapy” he wasn’t hearing my mom and I say how I’m bed ridden since he changed my meds so I’m back on the hunt so I’m wondering how knowledgeable Dr Wallace is and if he is a doctor who takes the patients words wishes and thoughts to heart before deciding on an approach
Kera Hoagland-McGee - Here’s a pain relief tip given to me by someone with fibromyalgia. It’s so effective yet inexpensive. Take a minimum of 1,000mgs Vitamin D. (Add Vit. K2 to improve absorption.) It may take 2-3 months to work but you’ll feel the difference when it does. It was 6 weeks for me. Many of us can be deficient in Vit. D, so this makes some sense.
Same experience! I’m sorry!
Same for me, my pain is horrible and non-stop. Only hydrocodone ER and IR work, but even they only work half they say it should. Gabapentin does help, but that's for my Adhesive Arachnoiditis (which can be caused by EDS, BTW).
We qualify for palliative care, which are an exception to the opioid guidelines. The CDC is loosening the restrictions right now as I type this, though palliative care is what we truly need anyway. All these symptoms are unbearable... Look into it.
Kristin - This video means a lot to me, as it was like I was telling it myself! I grew up w/ horrible stomach aches and "growing pains," but my mom said I was a “drama queen.” At 18 a sleep doctor prescribed medicine enabling me to function somewhat normally. I worked hard to put myself through college and built a new house (all by myself) by 25, but I hurt my shoulder and everything fell apart.I don’t have a support system, but this is exactly what I’ve being trying to get my mom to understand!
I haven’t been confirmed for EDS but I do have a comorbititiy and symptoms. I’m working to find a specialist now. If I have it I hope my family takes it seriously because the signs were there for me and they are there in some of my family too. I pray my mom listens
My 21-year-old niece recently diagnosed herself after years of doctors, tests, and misdiagnoses. I hope she can find a doctor who can ease her symptoms now. She’s got the speckled heels, hyperflexibility, fatigue, and gastrointestinal issues galore. It’s a rough thing to deal with, but having a diagnosis must help.
I'm so glad to share with you my experience on how I got rid of my EDS with dr imenherbal herbs on UA-cam channel. No more chemo. am completely free. Thanks Doc. ua-cam.com/channels/1PVLGW.html
I’m watching this video 9 years after it was posted. I really appreciate you sharing what life is like with EDS. I have hEDS, (possibly classical, but my insurance doesn’t cover genetic testing), with many comorbidities. As I age, I am noticing the progression of this condition, and it’s scary. Trying to find fulfillment within my limitations is hard. My geneticist shared the following, and these statements are so helpful for me to remember. 1. “When the issues don’t connect, think connective tissues.” “EDS is not rare, it is just rarely diagnosed.” Keep dazzling 🦓
Was diagnosed with hypermobility and fybromyalgia in my early 40s (nearly 49f) and since my stomach has got worse (gastroperesis/paralysed) and I found out that my joint pain was actually sub/dislocation I started to research things. I had wrapped and braced my own joints to cope with any weight bearing activities and found out about eds. So dreading the drs visit I went in with a list of symptoms and he ordered xrays and mri. In the meantime the dr had researched eds and gone through my records thoroughly and confirmed that he suspected eds. I'm now waiting to go to rheumatology for a full diagnosis. I'm so greatful that the dr didn't shoo me away and actually took time to listen and research in his own time. He has seen me for multiple ailments and I always try to see him and only him as its so important to have continuity so that all the pieces of the puzzle can be put together. Thanks for the video, was very helpful.
I was recently diagnosed at the age 38 went my whole life feeling different and knowing something was wrong. Doctors thinking your crazy. I wish you and your family all the best. Thanks for the video.
Thanks for making this video. I'm 35 and I wish people, speaking about me, said things like, "he doesn't let it stop him", but that wouldn't be true. I have been completely disabled for more than a decade. I have little to show for my time here. I don't even have many friends left - most of them are busy doing the things most 30-year-olds do. EDS can be very lonely.
Kristin Means is an angel in this world...and beyond. This is one of the most informative videos on EDS I have ever seen.
Thank you so much for all you’ve said. I’ve EDS and was told my children could not be diagnosed until adulthood at my hospital. I’ve learnt other things I need to investigate about myself and more importantly my children. I will now fight for tests for us all. Knowledge is power and I’ve read and listened, but there is always more to learn. Bless you and your beautiful family xxx
This is my story too. I fell apart in totality after the birth of my second child. Also I have passed this condition to both my kids unknowingly. Thank you for this.
I’m so angry. I will turn 50 this month. After being dismissed by doctors and told I’m crazy or seeking pain medication I know I have this. I have seen a few good doctors that have looked at imagining of my spine and have been concerned. They have not offered many solutions, of course. Just told me to deal with it. I think me being so flexible confused them. I was taken out of gym class regularly in middle school because of kneecap dislocations. My shoulders are so painful now that I can barely lift anything. Please listen to your patients doctors. Don’t think everyone is lying. My body is done at 50. I have no life anymore. No doctor and no help. This is no existence.
I'm so glad to share with you my experience on how I got rid of my EDS with dr imenherbal herbs on UA-cam channel. No more chemo. am completely free. Thanks Doc. ua-cam.com/channels/1PVLGW.html
I really love this video. I'm 15 and I was recently diagnosed with hypermobilty syndrome, which might be EDS. I have really been struggling with it because I think my friends and family don't know what it actually feels like everyday having constant pain and everybody telling you that you're fine and its just growing pains. This video really explains a lot of what is going on and I still have more testing in my future... I hope my friends will watch this video even though its long to better understand what its going on and to actually help me with it. Also, I have trouble telling people whats going on and I only tell them if they ask, but at the same time want to raise awareness. I wish I could go back to 2 years ago when I wasn't in pain almost everyday.. :(
Sarah Bond if you want any information I can definitely help you find out a good plan of diet and I'll tell you what I take
Kristin, I had no idea this is what you and your children are going through. You are an unbelievably strong woman. Love to you, Michael and your boys. Gabby Woods
Growing up in the 1960s and '70s, I was told my pain was just growing pains. Every night I would massage my legs, maybe have a hot water bottle, but not much else because there was nothing more to do.
Although I do find taking magnesium before bedtime helps a little.
I admire her audacity and using her personal experience to educate people about EDS. God bless you & your family.
One of my best friends has EDS Vascular. She was active and seemed normal. She is now in a wheelchair full-time. She doesn't let it stop her. She is a Special Ed teacher and never misses a day. Even though she could implode at anytime, I have never seen her anything but upbeat. God bless people with horrible disorder.
I've never even heard of this condition but I will share this on facebook and with as many people as I can. Stay uplifted. You have a wonderful attitude. May God bless you and yours.
I also have eds. I have two children 7 and 10 years old, and my youngest have eds.
Life is hard but some how we learn to roll it.
Thanks for the video and for spreading the word about eds.
My PT told me I was hypermobile and that's why I kept getting injured. I came across this video shortly after that. After I watched this video it sounded so much worse than what I was experiencing. Sure, I dislocate and sublux joints but it's not common. Sure, I popped my hips in and out as a kid but didn't know that's what I was doing. I didn't realize that wobbly feeling I had was instability in my joints. I watched this video and thought this wasn't what I was dealing with and left it alone. Many months later I came across more videos talking about the connection of EDS with comorbidities like gastroparesis and IBS, both of which I was diagnosed with starting over 10 years ago. I got back in the train to looking into EDS. I found that it's a spectrum disorder. I think it would be very important to note that as this video was initially steering me away from what I found is what I'm dealing with. I pass the criteria for hEDS, have gastroparesis, and have POTS. Thankfully, my echocardiogram came back normal so no mitral valve prolapse (which my aunt has but is also a mild case with little to no regurgitation). A lifetime of searching for what was wrong with me and it's all coming together. I'm in the process of learning about MCAS because I have lots of food allergies and show other signs of it with unknown rashes, etc.
So, for anyone else out there who is searching for answers and may also have a milder case, keep looking. It's a spectrum disorder. Many lead lives not even knowing they have it. I thought a lot of what went on with me was normal. Turns out it isn't. And the person who steered me back on the path of learning about it also helped me with herbs and oils and natural things to help with my pain. Most days I use a lower dose of CBD oil but on days that are exceptionally bad I use stronger things, including topical and internal and it allows me to at least get through the day until that flare dials down a bit. Keep searching. Never give up.
The symptoms you describe... I don’t have them all, but it was like the words I’ve said a hundred times, never realizing it was EDS. You even mention things I’ve heard my grandmother suffer from, my mother’s experience... Wow. Great talk. Thank you.
Watching and hearing Kristin's storybis sooooo painful for me. I know EXACTLY how she feels and what she is going through. It does make me feel better to hear that someone else knows what my life has been like. Thank you for sharing.
I’ve given up on trying to get a diagnosis. I’ve been referred to a geneticist by 2 different doctors and after 2 years, I have still never gotten an appointment. All 5 of my kids shows signs of ehlers danlos syndrome. My kids school knows so it is very common for me to get a call from the nurse to bring hip braces, knee braces, elbow braces, etc. my kids want to play sports and I have had to tell them no. They also get muscle knots and have to take them to get a massage when our massage gun isn’t enough. It’s frustrating knowing there is no way to get a diagnosis. Have thought of traveling to England to try to get a diagnosis since it’s more well known there.
I'm so glad to share with you my experience on how I got rid of my EDS with dr imenherbal herbs on UA-cam channel. No more chemo. am completely free. Thanks Doc. ua-cam.com/channels/1PVLGW.html
thank u...im going through this right now...
Thank you so much for this information. My daughter (13) and I found out we both have it.. hers is worse than mine was when I was 13. She has chronic pain every day (I do too now, but it didnt happen til I was in my 30s).
Its really hard to find doctors who know about EDS. We really need more!
I suffer with this as well. thank you thank you for posting this.
I have EDS too. Got diagnosed at 32. I use wheelchairs (power and manual) and an adapted van to get around. I have also had lots of health problems all my life, and was "injury prone". Having good wheelchairs have really made a huge difference, no more braces and also lets me do daily chores as arrends, shopping and such, which is such a relief to be possible to do, but my energy level is very low and I "crash" from doing small things now.
My heart goes out to you and your family bc I know exactly what you have gone and are still going through.
You are truly an inspiration! Thank you! I am a Chiari and EDS Warrior! It's a fight everyday, and I feel misunderstood all the time. It's a lonely feeling. Your strength is encouraging. I pray for you and your babies, because I pray for all the ones who have an invisible disorder, and chronic illnesses. To get up and fight everyday makes us all Warriors!
Beautiful talk for anyone who has this disease or knows somebody who does. What an amazing person.
Thank you Kristin for this video. It took me a couple days to get through it because it touched me so deeply because it's so surreal to hear someone speaking the life you've lived. How odd my childhood was, all the signs were right there. I hear a lot of children and teens with stomach issues being passed off as just nervousness or anxiety related but it wasn't. Everything makes sense. Thank you again.
Thank you Kristin for sharing your story. Having your child enduring the same pain you did is insult to injury but early detection is truly key and in that regard you and your family are fortunate. I was finally diagnosed this year (today actually) at the age of 43 with type III EDS. I'm upset because I did most of the research solo and essentially self-diagnosed myself after doctors kept saying that I was just injury prone. Not the smartest thing to do, I know, but I was correct in my suspicions. I found two physicians who were on the same page with me here in Chicago. My big toe, both my hips and my fingers started to intensely hurt until I couldn't take it any more. Both my knees and elbows bend backwards like yours do. X rays revealed early onset osteoarthritis and I suddenly had bilateral hip impingements. I was stuck in chairs several times as both my hips would lock. Nearly 20 years ago I had a L5/S1 spinal fusion to correct spondylosis and I can still remember the pain of standing or sitting too long. It is starting to cause problems again as my discs are rapidly degenerating. The subsequent years were marred by several injuries including a pectoral repair as I tore it bench pressing (it wasn't even close to my max), I sprained each ankle a minimum of 2 or 3 times which resulted in reconstructive surgery to reinforce ligaments and tendons, left hip reconstruction, and coming soon...right hip reconstruction. Both labrum were torn, each femoral head had to be reshaped due to gross deformation, and a key ligament needed to be elongated as my hips would painfully snap each time I tried to rotate them. From the time I was a child everything snapped, cracked or popped-even my sternum. Migraines, fatigue, depression, mitral valve prolapse, aortic root dilation, tachycardia, nausea and vomiting with exercise, syncope are all commonalities now. My career as a police officer will be cut short and I'm actually okay with that I suppose. These streets are tough enough without having to worry about what I was going to injure next. Ultimately, I'm relieved that I stuck with it and sought proper medical advice from multiple sources and not just one primary care doctor who wasn't taught to look for these kinds of diseases.
Thank you so much for sharing. so much of what you said sounded like an echo from our life. we are still learning a lot so the fact that you shared your story is deeply moving
thank you. for sharing your story.
So much my story! Esp the part about things making sense after a diagnosis! Thank you for sharing your story in a clear and understandable way. Your boys are beautiful and are so blessed to have a wonderful family. Hang in there....as if we have a choice.....God Bless
Thanks so much for sharing!
My heart goes out to you and your family. My God be with you
I have been considered something of a freak my entire life because of my hyperflexibility and now I have horrid scars on my face that I'm asked about..........at age 54 I'm still looking for the reasons my hips, ankles, wrists, elbows, thumbs constantly pop out of joint and I scream out in pain........thank you for this. I could cry!!
I seem to have the hypermobility type of EDS, so I'm fortunate not to have had some of your medical issues. (knock wood) I'm feeling pretty emotional at the moment - I'm sorry your kids both seem to have EDS as well, but glad you're aware of what's going on and can help protect them. My knees have been my biggest single problem, over the years, and much of it is due to having tried to do too much when I was a kid. I shouldn't have been trying to run, or even riding a bike. I'm glad you have so much support on this hard road, and so much love within your family.
I just want to say thank you for shearing your story. My husband and I have been dealing with his eds for 3 years and it's so hard to explain what's wrong and how it affects our daily lives, as you have stated people who suffer with eds dont look ill. So thank you so much for helping us explain to our friends and family what it's like to live with eds. I wish you all the love and happiness.
thank you again!
Peace and love x
That was a great speech , thank you for helping me. I see where I should have been hospitalized. I pray to God that I may find a good doctor. They have misdiagnosed me as fibromyalgia. In the last month 3 Close relatives have had their genetic testing all Positive. Yes, I have had it since a child, everything adds up & my sister is a great nurse. Many blessings, MrsJwife
Thank you so much for sharing. We have a bit of comfort when we learn we aren’t alone.
I have EDS too. Thank you so much for this video x
Same age when I was diagnosed. Now, I'm 34. I soo... thank you for this video.
So grateful for this video! The struggle is real!!!!
after living through all this, you can still stay strong. i am praying for you
Great job, thank you for sharing your story. Stay strong.
I'm sorry about everything that you have had to go through. I really hope that they can find a cure or at least a better form of treatment for this horrible condition. I hope that everything starts to get better for you.
thank you. this helps me understand my condition a lot more. really, truly, thank you.
This video is so informative. You did a great job. My friend just found out she has this and your story explains a lot of what is happening to her. She thought she was going crazy trying to figure out what was going on and she kept saying she had a bobble head thing going on before she knew about this diagnosis for years and she's been in tremendous pain. Thanks for sharing the video.
You are an inspiration to me...I am 29 and just within the past year have been diagnosed with EDS type 3 and luckily my TMJ doctor noticed the signs of EDS and has heard of it. I have been dancing my entire life so i thought being flexible and being in pain 24/7 was normal...and I was always told by doctors that nothing was wrong with me...You are very stong and hope someday that I can be as strong as you. Thank you so much for sharing your story :)
You are a true Blessing Kristin.. My 7yr old daughter and I both have type 3.. I too, saw the signs early with her and it was because of my persistence that we were both diagnosed.. she will be gong for her 3rd knee surgery this year. our family feels so greatful as well for the support we have recieved...Canada needs more awareness/advocacy and education on EDS, and I am making it my mission to help spread the word up here so no more people with eds have to suffer in silence...
Thank you for being a spokes person for us. People and doctors need desperately need this information!!!! God bless you and live day by day. I'm 42 and just last year got my diagnosis!
God is my hope!
thank You for Your Video
I hope pain will go far away of your family.
Gr8 vid. I was diagnosed at 31 years old. I'm now 32. I can relate to a lot of what's mentioned in this vid. I have to rely on a crutch when out & about. I have been disabled by EDS3 :( Shoulder dislocations alone are total hell. I have sooooooo many other problems related to EDS. Thanks for the video :) It REALLY helps raise awareness. I will share video with others, other EDS sufferers I know etc.....
Thank you all again for the kind comments! I am extremely glad glad it helped. The type of specialist you would want to see is a geneticist but you want somebody who has a lot of experience with EDS. I have heard of many people who have been diagnosed by their rheumatologist as well. If you need a good geneticist near you check the EDNF to see if they still have a list of doctors.
Amazing talk. So informative and well spoken. I know this video is old but just came across it while researching for my son.. Thank you.
Wow!!! Everything you said is like you took a page out of my life and just read through it. I am going to my genetics testing this week and PRAY to God that we finally found the missing key!! Thank You.
what an amazing positive attitude you have....my hopes and wishes are with you ♥
Thank you so much for sharing this presentation. It summarizes so much and in such a clear way. I wish I had known all this years ago...
very encompassing video. Glad for you in many ways but sad in others. my struggle isn't as extensive but quite painful. It feels good to know the struggle is real and we're not alone.
Thank you so much for sharing your story ♥️🇨🇦🌏
Thank you, Kristin, for this video. I wasn't diagnosed until I was 59. I was always told that something was wrong with my joints, but no one knew what it was. I am amazed that doctors don't know about EDS. I diagnosed myself, and then found a geneticist at Children's in D.C. that confirmed it. I am in Frederick, MD. I am about to have my 18th joint surgery on Monday. I will keep you and your family in my prayers. We will all cope with this disease as best we can.
This video is wonderful in that it raises awareness of this little-understood condition which affects far more people than have actually been diagnosed as suffering from it. What a brave and very articulate lady!
Thank you , my little daughter just finish 4 years, is very flexible and few other symptoms, i think she have this syndrom. Thak you, i'm affraid so much but waching you make me feel bit better. Thanks , - mather from Poland, Warsaw. Wish you the best!
This is an amazing video that people really need to listen to. I'm 16 and from an early age i did exactly what her son did and hid the pain. I was 7 when i first experienced excrutiating pain but just didn't tell my mum because i didn't think much about it and it ended being appendisitus but my appendix has necrotised completely. I've now had nagging pain for 5 years, my shoulder dislocates and my skin is stetchy and i'm thankfull to this for convincing me to get checked.
You're wonderful!
Thank you thank you thank you
This young courageous lady is amazing, I have a family member who was just RECENTLY diagnosed with EDS 3. She was an athlete, has a good job...and yet constantly had said she was is such pain... Now with the diagnoses of EDS 3 , though shocking, many questions are answered .It is difficult to believe the bravery people like Kristin has AND MUST HAVE. It is so admirable for Kristin to take the time to explain the facts and challenges of EDS. Thank you Kristin , you are a good person, you are beautiful, and have a beautiful family. Your attitude is so positive for others to see.... God bless you
Thank you
Very interesting to watch! I am currently seeing doctors about my son re EDS. I am pretty sure that he have EDS he have a lot of the symptoms and flexabilities that comes with it. It was so good to hear you talking about your experience and to get some more information about EDS. Didn`t realize it can be so serious! We live in Sweden and I hope that the doctor we are seeing on Wednesday will listen.
Thank you, Kristin, for sharing your story. My grandson has just been diagnosed with EDS so knowledge is power, to some degree. Certainly knowledge aids in our understanding of this peculiar syndrome. Thank you again for sharing.
Hello I have EDS and I completely understand what you have been trough I have been through hell with doctors and the person who diagnosed me was my dentist I live in france so it hasn't been easy at all so I just wanted to say that you inspired me!
I have EDS to I found out when I was 9 and now I'm 11 I can't run anymore and some days its hard to move I was terrified when I found out and I was alone I was the only one in my school and I still am thank you for informing me more about it thank you you helped me and hopefully we can get through it my friends worry sometimes about me and they have every right to right now I am in my bed hard to move my legs and hopefully get better in the morning
Piece out b does mc
Praying for you sweetie ❤️
thank you it means a lot to me I'm almost 13 now
Awe hope everything is ok
How are you doing lately? I hope you are doing well
Stay strong, sweets. I'm 38, it's been hard but when you know what injures you, you can make sure you have the right things in place.
Sorry to essentially hijack your amazing video but...
I've never heard someone explain my life and pain so well. I haven't been diagnosed with EDS, but I have a lot of the symptoms. I've had more than one doctor accuse me of "pill seeking", "too young for joint pain/arthritis" or that I'm "exaggerating" pain... "no ones joints hurt that bad on a daily basis..." Even when I specifically state "I don't want drugs, I wabt help." How do you deal with all of those nay-sayers, and advocate for yourself in a way that can lead to a diagnosis (or maybe a confirmation that I don't have it?) I'm at wits (and pains) end and don't really know where to go from here.
Print out the beighton scale and bring it with you to a Dr.
I knew I was ill but no one took it seriously, I felt like I was going mad at times and I understand how you feel completely. Fight until you get the help you need. I see you posted a year ago and I hope you’re further down the road now and have some answers. You are always entitled to a second opinion. I read and actually diagnosed myself, my gp referred me to the hospital where I didn’t even get to see a consultant but one of their team whom said I hadn’t got it. I was seeing a physiotherapist at the time and she agreed that I was right so I got referred to one of our larger more high profile hospitals and in one appointment my life changed. It was bitter sweet, I was devastated for my children and myself but I also for the first time could explain to people why I was ill rather than looking like I was some mad woman. Keep strong? I know it’s a long road xx
I know you said this a year ago but you need to stand your ground and make they understand that you are serious. I’ve dealt with EDS all my life and i only got diagnosed in 2016. I had gone to 4 doctors and 3 of them denied me because they didn’t believe me
This video led me to diagnose this also right at two years ago. Now I'm out at Hopkins, and despite all these diseases, my MALS is apparently the absolute worst.
@@alyshiamatcheson5961 I’ve done this and the doctors do not even want to look at it. I’ve been referred to a geneticist and after 2 years I still haven’t been called to make an appointment. I have given up on trying to get a diagnosis. My five kids all show signs of ehlers danlos and they need to often wear all kinds of braces and need to use the massage gun or even take them to get massages. I just started telling my kids orthopedic doctors and cardiologist that I do have ehlers danlos and that I think my kids have it. Usually the doctor doesn’t know there is more than one type and just makes a note of it in their file. I just google what pain I am having and what brace will help. I’m just glad I found out what it is so I can help my kids. I also do physical therapy on UA-cam and try to get my kids to do some for whatever is hurting them.
my grand daughter is 16 and was diagnosed a year ago with eds. Up till then she was involved with dance, soccer, and basketball. since she was six years old. People would look at pictures of her as a child and comment on her strange leg pose. At dance she did very well due to her flexibility. being undiagnosed for so many years I am afraid for her future. The stomache aches , headaches, and joint pain were all signs that no one was aware of. She always had regular checkups and was seen for a lot of discomforts, but no one knew. Thank you for bringing awareness so other children will not have to suffer with out knowing why.
i will tell you that osteopathy and Dorn have help me a lot! Thanks for all your wisdom!
Kristen Means, Thank you for sharing your story. I have been dealing with severe pain for around 9 years. I was diagnosed with hypermobility just a few years ago and suddenly everything was making sense. I was so angry at first and in shock. Because everything the doctors had done for me after the car accident was stretching and doing things that were harming my body more. I knew my body was going through damage after damage. I knew things were wrong but nobody would listen. I kept telling them something more was wrong and that the treatments they were doing were not helping and were causing more pain. Needless to say it's been a long long journey for me. I have been at it alone. Very little or none family and friend support. My gyno recently mentioned maybe I should look into eds because I told her a new doctor I had seen found my copper levels were high. Now I sit for the past 3 days watching youtube videos about peoples stories and crying bittersweet tears because I feel I finally know whats going on with me. THANK YOU for sharing your story. Do you have a facebook? I need to see a Doctor that can help diagnose me or help me with the eds and hypermobility. What kind of Doctor do I look for? I would love to learn more from you.
Tigress_Free2BeMe, I have the hypermobile type of EDS. A rheumatologist may be able to give you a good dxs, but a geneticist who specializes in connective tissue disorders is your best bet.
I just found out recently (I'm late 20s) that I have this, but I have different symptoms it's really hard and thank you so much for this video !
Bittersweet diagnosis.. First relief then depression bc of the Realisation nothing will change. The pain will never go away..
Ty for those wise words
I just turned 18, and about 2 years ago I received my diagnosis of EDS. Growing up I could do "tricks" making it perfect for acro class. Starting at a very young age I had acute joint pain.I can't even count the number of cast, splents, and braces I have had. As of right now I a recovering from my 6th surgery. The pain I am in is unbearable at times. Recently I was also diagnosed with hypersensitive vasaovagal receptors, a dangerous heart condition. Also, TMJ & ITB. Thank you for your story!!
Thank you I was diagnosed at age 10 with EDS in 1992. I finally got my finger splints in 1999. I experienced all sorts of mobility and flexibility issues in my teens. Now in my 20's I am experiencing bleeds. No one knows anything about EDS. Maintenance and management seem to be all over the place. A note to anyone with EDS. Getting a type diagnosis of the vascular type can make you ineligible for certain types of insurance late in life. Monitor AS IF. Avoid type diagnosis of vascular disorder.
I hope you are doing well
I have Hydrocephalus which caused other nueorological problems and many surgeries
You are a true hero...you and your family God bless you all ,🙏🏼
Thank you for sharing. I have EDS type 3, diagnosed about 6 months ago. My symptoms are not as severe. I have a 20 month old daughter whom I have already taken to an ortho doc about her rolling ankles, but they told me there is nothing to worry about. She only has flat feet, no big deal. After seeing this I am thinking there may be more I should do.
Thank you! Everything you said...
Thank you for your bravery and telling your story. I just found out last week that I have eds h . Listening to you reminds of of so many things I grew up thinking were normal and ended up being because of eds. I had to even switch rheumatologist because the one i was going to wouldn't even talk to me. He dx me with FMS H. I had taken a list of questions to him and he just crumpled up the paper and said its your fibro deal with it and walked out of the room. (Fastest and most unsatisfying 100$ spent ever!) So i decided to go to somewhere else. I know i have a lot to learn about it. And I am so afraid of my children having this . I never want my children to have this! And they are showing signs..which i feel terrible for.
Hi Kristin! We met at Dr Henderson's this week! I wanted to let you know since you saw me leave with a neck brace, I do not have Chiari, thank goodness! But I do have a Cranio-Cervical Instability and "Stretch-Associated Injury in Cervical Spondylotic Myelopathy" (Stretched nerves - and nerves don't stretch very well). I also have Tethered Cord. It's at least 2 surgeries. I will be in a brace a while and will likely have surgery.
Bitter-sweet diagnoses. All makes sense now.
Thank YOU!! U Have Told Much of the beginning of my Story!! Yet IT GETS FAR WORSE... I AM NOW 43...I AM ALONE AND TIRED OF LIVING THIS WAY... ACTUALLY I AM JUST READY TO B DONE WITH LIFE!!! WELL I WANT TO THANK U .I NOW KNOW WHAT IS WRONG WITH MY NECK AFTER ALMOST 20 YEARS NOW!!! MAY GOD TRULY BLESS YOUR FAMILY!!!! I ALSO PASSED IT ON TO MY ONLY CHILD!!! THE HARDEST THING WAS KEEPING HIM OUT OF SPORTS.... ALTHOUGH I C IT REALLY STOPPED ALOT OF HIS SUFFERING
Thanks for sharing! One thing: not everybody has to have stretchy skin. Not everybody has to have popping out joints. EDS is extremely multiform due to the huge amount of genes and enzymes involved in collagen making, not everybody has the same genes effected, hence just because you don't have stretchy skin, doesn't mean, you don't have EDS or any connective tissue disorder. Even worse I find to have internal organ manifestation like GI not working anymore....
Yes we all manifest our EDS differently. I have all small joints that dislocate and have a hard time walking due to my toes. But the worst EDS symptom I have is all my internal organs have prolapsed. This started when I was 18 years old. My stomach and bowel are both severely prolapsed, this has me on TPN for life. Due to my blood vessels and nerves not working right I can't stand up without my blood pressure tanking. This is called dysautonomia and it is very disabling. Most connective tissue is serving several vital functions simultaneously, including --transport of nutrients and metabolites, immunological defense, mechanical support. My immune system is extremely compromised. My tissues are are like wet tissues and we can't sew anything together because it won't hold. The list goes on and on. This is the cruelest disorder and I am so thrilled you are sharing your story Kristin and I just know you are helping many - especially children.
I feel for all who have to deal with this syndrome. It's really made life seem kind of cruel at times, but I don't think I would change anything. I have a lot of empathy for others whereas I may not have had without EDS. I wish I could still have my career so that I would feel productive but am lucky to have been able to work until age 38. I refer to my hands as fashion accessories only. In the last year I've lost almost all use and function, I am grateful for every day that I wake up:)
Excellent articulation and knowledge. If only seen ten years ago...Alas, still valuable. Shared with my four daughters...40-30 years old and all exhibit some of it. Pray they take it seriously as at age 68 almost just diagnosed!!! FM and other dump tank only. Glad finally connect the issues with the connective tissues. Maybe four grandchildren can be helped the most! Some show some signs. God's grace and mercies 🙏💕 I can vouch the progression. In a bad way every system above joint pain and escalation. Pray I can cope and get the help I need.
Thank you for your encouraging words to us in the midst of such pain & now teaching others like myself.I have just been diagnosed at 67 & my first dislocation was 10 yrs my knee cap & both knees then @ least 100 times by 20 yrs (of course 2 total knee replaced, I have most of what you shared but not so severe. Like you my life has been Drs & I’ve tried most alternatives because of the pain. Until I had a broken back with chipped & splinter bone my L spine with bulged & perforated discs & could have been a paraplegic …..all from a Chiropractic adjustment (the twist) my neck has totally fused itself also I believe from the twist. I didn’t have pain from the Chiro adjustments just the end result the fusion😳. Thank you again you were the best explanation to help me understand my life …I inherited EDS from both parents now I understand!,,Kind Regards Elaine💞💞💞💞
Wow, just came across your video. Thank you!! My family is just starting to deal with hEDS. our dr thinks my husband and I both have a form of EDS. All of our 5 children have almost all of the symptoms.