Ehlers Danlos Syndrome - Dying to Live

I made this video to represent our families battle with Ehlers-Danlos Syndrome type IV. We have been working with a foundation called Ehlers-Danlos Network CARES Inc. and I made this video for the contest we entered to win $25,000 and we succeeded. My aunt died having my cousin 14 years ago and we were told she probably had lupus.....so for 13 years, my mother had him repeated tested for lupus until he had another rare disorder come up that she knew my aunt had. Doctors kept misdiagnosing it as well. My mother found a picture on the internet that matched the skin disorder and read that it was associated with EDS. She asked the doctors to test London for both since they described my aunt to a T and on her birthday last year we got the notice that he tested positive for both. We pray that the research project that is under way will result in a treatment for EDS.

Category:

News & Politics

Tags:

• Rare
• Disease
• Day
• 2010

[Bevin313]

people who have been diagnosed with classical or hypermobility types can have as many vascular issues as everyone else. we need to stop re-classifying the types and just say that you have EDS presenting with these symptoms. only when we can throw aside our types and just stick together in this will we have a chance.

[beowulfbowsie]

@pimpinlobster88 i was too buddy, i remember the day i was told i had it and it shook me to the core. but honestly mate you have to conquer it. I take it from your profile your a skater, me too occasionally, and i know how there's nothing quite like failing a trick to mess you up. But, seriously if you love something, dont let the EDS get in your way, know your limits and be careful of them but dont stop. Like i said, im a martial artist so i get knocked around a lot. but dont be scared buddy :)

[mw3maddd]

The average life span of a person with eds type 4 has the average life span of 48 years.. all other types of ed (the most common types) have a normal life expectancy.

[mw3maddd]

The average life span is not 48 years for people with ehlers, most people expect to live a normal life span unless you have very severe cases. So I don't know where you got your information from but that is false.

[JuicyFruityDreamer]

I cried.

It's sad to know you'll die young. Especially when you don't deserve it.

[saturnianmusic]

i have EDS & I'm a medical student myself. Today is rare disease day. I hope more people will recognize this underdiagnosed disease. Best wishes to all patients of whatever disease. Live a better life with love =]

[pimpinl0bster]

@iamurbanlegend i got E.D.S last year when i was 14 its kinda tearing me apart.

[iamurbanlegend]

i have eds and im 13 :)

[LucaBlightBadass]

@beowulfbowsie Aint the stretching you do in martial arts bad for you, being already hypermobile an all, can you do the splits?

[KatieMarieWe]

Hi there, this is a great video, thank you for uploading it onto here. I have just started to do a video diary of living with EDS, as it's only early days, there is so much more I could say about the condition. So please take a look and see what you think. I'm trying to raise awareness about Ehlers-Danlos Syndrome, both here and on my twitter account: DinkyKt. Take care all of you and keep smiling. xx

[jonnysthedude1]

Good video, Im 50 now with EDS 4 , so its not the end of the world, with support and regular check ups and cat scans etc they can detcect problems coming..

My advice to anyone with it , is live your life as best you can, and be positive. Good luck. Thanks Cheeky, for changing my world.x