The Ehlers-Danlos Syndromes (EDS)

Because this has come up in the comments more than once, and because I have seen misinformation about this online: There is no genetic test for hypermobile EDS (i.e. the most common form of EDS); however there are genetic tests available for all other subtypes of EDS. This is because we do not yet know the gene (or genes) responsible for hEDS. If your doctor says that blood tests showed you have hypermobile EDS,, I'm not doubting that happened, but I really don't know what tests the doctor would be looking at...maybe that the genetic tests for other EDS subtypes were negative so they think you have hEDS by process of elimination? But that is not how hEDS should be diagnosed. It is a clinical diagnosis - meaning diagnosed on the basis of symptoms and medical complications, family history, and in particular, a physical exam consistent with the diagnosis. I would not consider it to be a so-called "diagnosis of exclusion" (i.e. diagnosed only after ruling out alternatives).

I was diagnosed with hEDS when I was around 13. I was told I was just hyper mobile and it was pretty common. Nothing serious. I’m now 19, suffering heart problems, chronic fatigue, arthritis, scoliosis, chronic pain, vision loss, and dental issues. I don’t know what I have anymore and no longer have healthcare to get re evaluated. Wish that doctor had taken me more seriously.

I knew nothing of this disease until I met a beautiful young woman who has it, she, unfortunately, has vEDS, and is wasting away at home bedridden, not getting the treatment and support she needs (the hospital sent her home to die). This is very difficult for the family to see her in this condition. Her life is being cut short by this disease, and too many have died because there isn't enough funding for the necessary research into it. Thank you for putting this information together and sharing it on this video.

It took me 25 years to be diagnosed with EDS. Only after I developed severe dysautonomia/ MCAS and heart problems that almost killed me. I have so many comorbidities and I’m really shocked that I spent so long desperate for answers while having a textbook case of EDS.

For decades I was labeled as "clumsy" and "double jointed". After years of repeated injuries, ER trips and doctors that thought I needed "psychiatric care", I passed out at work on top of another employee I begged my primary doctor to find out what was wrong with me. That ER trip the doctor said I had an "atypical migraine"! That's it, no other explanation...on your way. My primary had her suspicions for years but sent me to a rheumatologist. I received my diagnosis at the age 36! I fought back my tears. That was more than 10 years ago. My symptoms have always been there but were manageable. A little under 3 years ago I dislocated my C1 and C2 for the first time. It's been all downhill since then. I can no longer work, I have days that I can no longer do my own personal care and I am now on serious pain management medications. And I'm not going to shy away from this but I HATE pain meds. They take away so much. But anyway.....This disease robbed me of my ability to have a baby (2 miscarriages), ultimately my uterus, the ability to make any plans, and it makes it hard for me to think positively about the future. I try my hardest and I put on a great smile but it's hard. Knowing that you will be dealing with it for the rest of your life is hard to picture. But I'm working hard to stay positive and upbeat while adapting my world around me to fit this disease into a full life. I hope that in the end I can look back and say that I did the best anyone could do under with this disability. Better days are ahead.....Have a great day and thank you for the video!

Thank you for normalizing the discussion of EDS. Roughly 10 years ago I spoke with my doctor as I have Hyper mobility in all leg joints in the form of dislocation, scholiosis, stretchy skin, bruising (and fibromyalgia runs in my family). Otherwise I am very healthy 🤣. My doctor just told me 'I don't understand why you are here telling me you might have EDS, even if you did, it's only putting a grouped name against your other symptoms, naming it doesn't do anything' !!! And off I was sent feeling like I was a time waster.

I started going to the Dr for EDS symptoms when I was 14. I was diagnosed in 2020 at age 33. That should give you an idea of how confusing this area of medicine is. According to my genetic tests, meaning they were inconclusive, I have hEDS, but according to my symptoms I was told I am 1 of a couple hundred known people in the world who have some vascular symptoms without having vascular EDS. Basically this means I get all the crappy common symptoms as well as the chance that my heart will one day explode and I will die. If you are watching this video because you are frustrated with Drs, your body, or just plain confused, don't worry the rest of us are as well haha. Just be careful when getting recommended surgery or other "routine procedures." Stay in the best physical shape your body / pain tolerance will allow. Personally I exercise 6 days a week, but don't do heavy things like squats and deadlifts that may cause issues with my EDS. Personally, I stretch even though some Drs have told me not to. I do it because while stretching may weaken my "unrepairable tendons and joints" I also know what the pain of arthritis and inactivity feels like. (spoiler alert) They hurt much more than a little stretching. Hang in there everyone and good luck!

THANK YOU!!! I was only diagnosed with fibro+hEDS a couple months ago, but I'm a teenager, so I was statistically lucky to get a diagnosis at all. I was constantly told that the pain was in my head, and that I was just flexible. When I learned about EDS, specifically hEDS, it was such a huge revelation. I really appreciate you pointing out the self-diagnosis struggles. Sometimes people are misinformed, but generally, we're looking for explanations for what we're going through, and in doing so, do very thorough research. EDS is such a diverse condition, and it presents very differently in lots of people. Doctors and health specialists should definitely be informed more about conditions like it, and about chronic illnesses in general!!!

My father's side of the family has passed away around 40-50 with heart issues... There was testing for Marfan's but given these symptoms, I'm chatting with a doctor about possibly having vEDS in the family. Thank you so much for this video.

Anybody else feels like their ribs are slowly detaching from their sternums? No doctor has believed me and I've seen four so far. It's incredibly painful. Besides that I've got very translucent and weak teeth, myopia with astigmatism, strange dislocations and subluxations, intestinal problem, pots... I can go on, but I feel defeated by my doctors, none of them take me seriously. Last year a friend showed me an article on how to deal with the different symptoms of EDS by a mix of supplementation, diet, and exercises and it's been my go to. I've been able to deal with the extreme fatigues from the pots and I eliminated gluten and many high histamine foods from my diet so I haven't felt as weak since. Also the gradual strength exercises help with some of the joint pains. Honestly I feel like I have my life back, but I still have issues because nobody believes my pains, especially the feeling of my ribs detaching from my sternum, there doesn't seem to be anything I can do to keep that from deteriorating.

I think my daughter and I got extremely lucky. We went to a regular, well child check-up and the new, young, PA that we saw immediately put referrals in for rheumatology to check for hEDS. Which she has now been diagnosed with. Going to cardiologist this week. Reading these comments, I can see that many people haven't been so lucky. Mind you, my daughter has been complaining of pain for years. We were told she was having growing pains. As much pain as she had, she should be around 10 feet tall! But, I feel like things are moving quickly now!!

This is the most validating video I've ever heard on EDS. That you're a doctor, acknowledging these things, is very comforting to me after my journey with EDS thus far.

I have spent 20 years searching for help ! Once I was diagnosed my life have changed for better , therapy full-time awareness on how my anatomy works, nutrition, rehabilitation, and the most important thing is to have people around you who are positive and supporting you on journey to recovery! Hope you can find the support you need ! Love to all 💕

I just randomly read an article about this and I believe this is what my problems are from. I’ve always been hyper mobile, my joints loudly pop all day, my hips slip in the socket. I can apply sunless tanner to my entire back no problem, do praying hands mid back. I also have pale translucent skin, skin that stretches, low blood pressure, vain’s that leak, heart palpitations, I’m losing the cartilage in my big toe (hallux rigidus) my low back feels like it’s filled with broken glass. My hip labrum is separating and frayed. I have severe spinal stenosis amongst other injuries. I’ve sprained my ankles more times than I can count and starting to get torn muscles more often. I’ll go to the doctor asap but this is crazy to finally hear about this.

Thank you, Dr Strong! As a diagnosed hypermobile EDS individual, I’m so grateful for your advocacy. It’s such a challenging disease to live with at this time.

Awesome, I just had this case about one month ago. Love you channel. You are a great resource. Thanks

I’ve experienced chronic pain since I was 11 or 12 and was told by EVERYONE I was seeking attention or medication. I got diagnosed with osteogenesis imperfecta this year type 1 and when I brought up my hyper mobility and chronic pain and my concern I may also have hEDS I was told I didn’t know what I was talking about it wasn’t until I managed to get in a pain clinic that a doctor listened and believed me he mentioned it before I did and is now working on treatments for me I’m 25 it took over a decade to receive help. I say all this because if you’re reading this and feeling like no one believes you don’t give up I know it’s so so difficult but advocate for yourself and don’t take I don’t knows and “maybe try exercising” as an answer you deserve treatment

Thanks! I use this video to help people understand my diagnosis! Brief and informative!

Thanks for these series. Great as always!

My girlfriend has this and I'm trying to learn more about it. 😢