Hypermobile Ehlers-Danlos Syndrome (hEDS)

Just a bit bendy? Think again.

[KoshVader]

I was diagnosed with this condition recently.

For a long time I've struggled with joint pain, migraines, fatigue and I was always told I'm lazy. My knees aren't hypermobile but they almost always feel tight and like the kneecap is about to pop out. Clicking it reduces the discomfort but only for a few minutes. The only thing that helps are compression sleeves but they hurt after a while.

[gay_skeleton_wars]

I was diagnosed and no one at school understands that if I do hockey or cricket and I get hit it's going. To be worse than a bruise ever since I could walk I have wanted to be a gymnast but I was told that I could never even jump from above my knee. I walk to every day I walk to and from school and around the site and it hurts so much. If I tell a teacher that my hand hurts to much to even hold a pen because of the many dislocations the don't believe me and tell me off for trying to get off work. I now hate school because I get bullied by so many people because I'm different I have never met someone my age with and of my problems, I could go on but it hurts . I want to meet someone like me. Please

[cammieksandi]

Can I donate by text from America?

The American EDS Charities offer support and information but by far not at the same level as EDS UK! I'm always so amazed at what the EDS UK has done and is doing for the Ehlers Danlos community. Although I am an American EDS3 patient, I want to do all I can to support EDS UK. Thank you ffor all you do.
Love to you all from a Fellow Zebra - Sandi

[dolly]

Yeah sick of being told I'm just flexible!! far more in-depth than that. Educate and inform, not judge.

[jessicagoldsmith]

Its funny because I have EDS and professor Rodney Graham diagnosed me and my mum

[mistypatterson]

I was just correctly diagnosed with hEDS and have to have bilateral shoulder surgery. My left shoulder first seeing how its the worse and my arm just hangs there. Nothing holding it. I am double jointed in every joint, i have scoliosis, degenerative joint disease and also chronic pain all over and severe arthritis. Im only 21

[arlynnt]

My 15 yo niece just died from this disease last April 2021; she did gymnastics, contortion and aerial; it’s too bad there is not that much that u can do to cure or at least live with this disease; our family was heart broken with the unexpected death.

[theeverythingkid]

I'm going to share my story.

Hi, my real name is Rebecca but I'm the Everything Kid. I'm 15. I have a lot of medical problems. I was born with congenital diaphragmatic hernia and had to have surgery to repair the hole in my diaphragm, due to the hole and my organs moving up into the left lung I do not breathe through my left lung. Now that, that repair is complete I was also diagnosed with asthma at a young age. Before beginning school I believed it was normal to have a large scar across the stomach and I thought my parents where strange because they didn't have a scar on the stomach. Since starting school at age 5 I found out that people found it funny that I had a scar and they didn't. I was left distraught and confused. Physical education was an extremely horrible time for me. I was diagnosed with Erhlers Danlos syndrom at age 12 when my ankles where dislocating. I suffer P.E and get told to do the best that I can but because I am scared to be laughed at I over work result in asthma attacks and joint injury. My life keeps getting more and more difficult.

[Skullmiser]

I would like this video more if not for the piano.

[shannongreenwell]

I have Classical EDS but I do have friends who have the Hyper mobile type and I see the struggle they have to deal with and how rude people can be towards them, they’re rude towards me. It’s sad whe live in a world where people are just so mean and rude as well as disrespectful towards people who have a invisible illness.

[london]

I have just been diagnosed with this, i am kind of scared now as to what will happen in my future.

[fickledame]

Is research being done on this area then?  Could you give me more information please?

[xXJellyXx]

i mostly only dislacate my fingers though my sister dislacates her legs and arms alot :(

[jamesm]

honestly considering messing with crispr just to stop the damn pain

[FredrikSimons]

What happens when they find the gene mutation for hypermobile EDS? Will this help administer any medicines/cure or will this simply help reduce the number of people affected in future generations?

[christianigiovannini]

All thanks to Dr Aba for curing from EDS Am forever grateful….

[zeynand]

gene for hypermobility or biomarkers for hyper mobility?