Hypermobile Ehlers-Danlos syndrome in a nutshell

I have ehlers danlos hypermobile from my mum and it’s so hard to explain to people. They always just say ‘oh so your double jointed’ I have the symptoms like chronic back neck and knee pain. I have problems with bladder control and get very dizzy a lot of the time when I stand up. I also have very clicky joints and I often dislocate my fingers and knees. I also get heartburn and I also have long fingers and arms. It’s really frustrating because no one really understands. Most people don’t realise how serious it is and just think that I’m a bit more flexible than usual and that I get a pit of back pain. This video perfectly describes the condition and there should be more awareness about this 👍👍

Does anyone else wonder if the depression and anxiety (chronic and debilitating for me) come from the fact that we live in constant pain and have to learn to be okay with that?

I have EDS. CPS and Fibro I agree it is difficult trying to explain especially to GPs who havent a clue. I was lucky to find a consultant who knew straight away just by looking at me what was wrong with me after years and years of pain. Being made redundant from work through ill health made to feel inadequate and now fighting a system that doesnt care about the sick. Every day is a struggle try telling that to those who google EDS they haven’t a clue. Hello to all those on here who know how hard it really is 👋🏻❤️

The estimated occurrence of EDS due to mis or underdiagnosis is that it may be a 1 in 500 problem. I have EDS, Fibro, Sjogrens, osteoarthritis, and hypothyroidism. I FINALLY found an EDS specialist, and EDS trained Physical therapists. Now I'm trying to correct issues that have been caused in my body through those misdiagnosis. I had a shoulder with a torn tendon and muscle for 28 YEARS that was finally repaired after being ignored for that length of time. The surgeon said that unfortunately BECAUSE we have EDS, we may be able to use an injured joint that needs attention, so it Is ignored (because we can use it!) until it gets to the point that the damage is so severe it can no longer be ignored. I've had this stuff my entire life, and it was "growing pains", "strained muscles", "double jointed" and other simple issues that never got better. Had I received a diagnoses sooner than 3 years ago (you may not be diagnosed until 40s, 50s or 60s in some cases), there are so many changes I'd have made in my life... NOT running cross-country track in high school, as an example. Pushing harder for definitive reasons for things. Knowing to MENTION problems that seem far away from the "right then issue". And I'm a retired nurse...

EDS hypermobile matches my symptoms and physiology but I have never been diagnosed. I have no idea how to even bring this up with a medical professional. I am 38 and most of my life doctors only wanna test you if you have severe crippling symptoms. So I have just lived with the discomforts. I’m not saying I have it, of course, but I am interested in at least getting evaluated for it. But I have no insurance and I live in Puerto Rico, so I am at a loss about what to do. I am grateful I have found a lot of relief and support in dance and yoga. Bellydance in particular is great for many of the symptoms. I have focused on strengthening the muscles around my joints and developing greater knowledge of anatomy.

This is perfect I can spam this to my friends and family so they can understand

Thanks for this video and clear info. I am 47, have had 4 atraumatic shoulder dislocations, am hypermobile, have scoliosis, stretchy skin, chronic neck pain, insanely long arms, hypotonia, digestive issues (etc. etc.) but none of the myriad doctors, PTs, naturopaths, acupuncturists have ever mentioned EDS. I hadn't heard of it until 2 weeks ago when I reached out to a PT for help managing pain, and after hearing my list of complaints (on the phone, without having seen me), she asked me if I'd heard of EDS. 2 weeks and a ton of research later, I've self-diagnosed that I have hEDS, and have a call with a geneticist in 2 months. Kind of wish i'd known this 20 years ago, but happy to be discovering what I have now

Hello, Natalia! My name is Manuela and I'm a zebra from Brazil. I recently wrote my master's degree thesis and as I mentioned the Ehlers-Danlos Syndrome in it, I was searching for vídeos/animations to include in my presentation. Your's is perfect, but the translation to Portuguese was really necessary so I made the subtitles to the video! We really need materials in Portuguese about the syndrome because there' s hudge lack of them around here!! Congrats to all of you for this beautiful job!

I love that Simon’s cat made an appearance...great video...thank you

Best introduction to this subject I’ve seen to date... thank you!🙏🏻🙏🏻😎👊🏻👊🏻

Great video. My son has this type of EDS, POTS and Mast Cell Activation Syndrome. He has tried swimming on and off but he has subluxations and dislocations from the resistance of the water. 🤦🏻‍♀️

Love this vid. Before I was diagnosed, I relied on videos like this to decide if j should pursue diagnosis. In an oft-misunderstood disorder, accurate info is key 🥰

This video is one of the best I've seen , it covers the very basics in general.

Thank you for producing such an excellent video.

Kusunoki Tomori (VA of Setsuna Yuki from Love Live Nijigasaki) has recently been diagnosed with this disease.

I have Hypermobile EDS and the first in my family. Whenever i try and explain to people what it is they don't understand and I've been bullied before. People always think I just use it as an excuse such as to not do P.E, which I don't. I would much rather do P.E then have EDS. I can crack my body parts and roll my shoulders back and make click noises. Everyone calls it weird and tells me to stop, although I can't choose to do it or not, it just feels as that'd what I need to do. It doesn't hurt if I don't but I get a funny feeling. I've been diagnosed by doctors when I was 8years old. I had no idea what it was really, as I was young, as I got older I found out about it and how serious it can be.

I have Heds. since i was 4 i have been dealing with knee cap dislocations. over time my eds got worse i had many knee cap dislocations sevral torn liguments and much more before i got knee surgery. i was diagnosed with eds when i was 8 but i didnt have knee surgery till i was twelve i ended up having it because my knee caps were dislocating almost everyday and i had torn my mpfl sevral times. i had an mpfl reconstruction, and now i am recovering from my second. im an so lucky i was able to be diagnosed early and i was able to be sort of normal though there are still the other troubles of eds to deal with i hope everyone with eds can manage to find a happy place.

Thank you so much for making this amazing video. It was the most helpful video I've ever watched about EDS. Great work!

Thank you for making this video! It explains everything so well! I got a lot of information and things make a lot more since now. Thank you

Thank you so much for this! I send it to people who want to understand what I have and what it means. It is the best tool out there.