Dancing Through the Pain of Ehlers-Danlos Syndrome

As someone with EDS, i’m always so glad to see representation and awareness being brought to an under diagnosed but debilitating diagnosis! While I sit jn the mild to moderate range, it has changed my ENTIRE life. I went from able bodied to dynamically disabled having to slow down a lot of the ways i functioned

Here is the US the abdominal compression syndromes are being found in many EDS patients as well as renal vein and pelvic vein compressions. I myself have issues with slipping ribs compressing things and compression of nerves and veins by my collarbone. Hopeful compressions will be seen as mroe of the norm for EDS soon as I want us all to be taken seriously and be dismissed yet again. Keep dancing!

These girls have amazing resilience and fortitude. Blessings for them as they continue battling onward.

I'm a paralyzed bilateral amputee, so I have no idea about your particular struggles but nonetheless can understand what life is like with a serious disability that affects everything. You both are resilient and have a very mature and grounded view of life. Wish you all the best, hang in there.

29 years since my first symptom and 21 since my issues began to really become a problem, I had a physician say “This could be EDS” to me for the first time just two days ago. Though my symptoms are (blessedly) much milder and I’m thinking it’s probably going to be HSD.  I’m very glad you got your diagnosis faster than that, Tyler, though I’m sorry this disease has taken such a toll on you. I’m hoping and praying you’re able to get the treatments and surgeries you need to thrive, and soon. You deserve only good things in life: a pain free body and all the dancing you desire. Hugs!

In the US we are sorely lacking doctors who specialize in these cases. A common Dr here will first say you're crazy, it's all in your head, accuse you of relying on you tube (which actually has great info) say you are self diagnosing. Here they all say...''you would have been diagnosed by now"...(how there is only one doc in the city who knows it). Then the docs who say..."what does it matter? would it change anything?) I KNOW I'm hypermobile, my entire life, as well as my mom. They won't even acknowledge that!Money is the talker here, if you can afford a genetics specialist, money always talks. A poor patient is invisible.

Thank you so much for bringing awareness to EDS , there's many misconceptions and lack of knowledge on it. I have EDS and am from Australia it's been a nightmare and big financial drainage trying to find doctors who understand this. I really hope doctors watch this

I have not heard of this. What a challenge in a life. I'm critical of social media. Now I know it has a good purpose.

I have hEDS and have lower GI dismobility. Thankful to still be able to eat! Their statement about how we might look like we’re having a good time but always checking in with your body in the back of your mind is so accurate. There is nothing, no moment or activity where you can forget.

Hi! First video I saw about this and I have the same syndrome. 🥹 it was associated with autism. Pain is really a constant issue. I have horrible head and neck pain. And I am constantly with bruises. Mental health is fundamental to deal with this situation. I hope people can talk more about this thing and be more comfortable and understanding. Just keep going ❤

I also have heds, thankfully I can eat but I did became gluten intolerant and my allergies keep increasing which I've been told is common. It's weird you get used to living with some level of pain daily, I don't think I can remember a day where something didn't ache. Thank you for sharing this.

To have to go to Germany to receive care and be believed emphasises how difficult this syndrome is for professionals to treat and acknowledge and accept it is chronic. The costs! The financial costs let alone the issues finding appropriate treatment methods or medications. Much love to these Women spreading awareness of Ehlers Danlos Syndrome’s

Thanks for recognizing this condition. Awareness is power.

I have hyper mobility EDS too it’s a roller coaster ride some days are great some not but I always say it’s a bad day not a bad life I have pain every day but don’t let it define or stop me this young lady is beautiful strong and inspiring it’s a hidden thing not many understand or have heard of we are not lazy our bodies are just physically tired plus gets frustrating when you hear you look fine your always happy when in reality you just want to hide

Love from Bangladesh

you definitely should be dancing, spirit and happiness is arguably even more important than physical health because it's what gets you through those physical issues and hard times. never give up doing what you love if it's possible :) anyone trying to get you to give this up is doing you a disservice tbh. It's up to you what you are capable of, not a doctor or anyone else.

I have mild cerebral palsy and few other health issues so I understand having a disability Rough but all got to stick together

I live in Brisbane Australia. I got diagnosed while living in New South Wales. Living in Brisbane is the worst place to live if you have eds. The resources limited nobody knows how to deal with it. I was 40 when I got diagnosed after years of misdiagnosis. I hope these two girls are doing well. The upside is that got diagnosed Young so they can start planning for their future why am I so late that I have lost so much independence since my diagnosis. The pain is horrific and every day is a battle. I recently had a fall and am now walking with a walker full time.. I wish I could go back in time and tell people what I know now

When I was 20 I had pretty severe digestion issues, my large intestine could cramp so intensely that my food wasn’t given enough to digest and the pain was so bad I would black out sometimes. I’ve never heard of abnormal compression prior to this. Luckily my symptoms have resolved almost entirely

Those girls are so brave , just inspirational, I wish you to get that operation in Germany soon