Ehlers Danlos Syndrome - Dying to Live

[iamurbanlegend]

i have eds and im 13 :)

[pimpinl0bster]

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

[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

[pimpinlobster88]

im 14 and i have eds. im scared.

[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 :)

[ufo8mykat]

If I can help anyone just send a message via my channel. :)

[ITSONLYMEWATCHING]

I'm 42 and still trying to get a diagnosis. I have been diagnosed with hypermobility syndrome, but no EDS. The doctors where I live are quacks. I finally got some help after threatening suicide because of the constant pain-the medical establishment thought I was malingering looking for drugs. I have chronic dislocations, from just lying in bed, floaters, gastro and heart problems, but no skin problems, although my father does. I also cannot have kids. Sometimes I wish for death.

[courtneytalbert51]

I've had 42 surgeries, and still going. Not going to let it get me down. 52 and plan on seeing my grandkids grow up.Other people just need to be aware that we do have something wrong even though we trek through life as if we don't. good luck

[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.

[kandinsky51]

Got diagnosed when I was 12, I am now 20. We need to show people that this is a real illness, not just some "phantom" one... I have type three and I know it's not as bad as Vascular, but it's still pretty bad. I'm here for anyone with EDS.

[jimbob202019]

Hey everyone can you guys sub too this girls channel on youtube, her account is

LivingWithEDS

Everyone needs each others support :)

[beowulfbowsie]

wait a minute, What! i have the Tenascin x deficiency type! and my lifespans now 48! fuck THAT!

This thing has fucked up my life so far, (im a massive martial arts fan) but it wont stop me! im going to keep fighting and doing what i love, so i ache in the morning, have bruises and swellings and occasionally dislocate something, but im not about to give up the things i love, lay down and give up!

I am going to live my life the way I want to.

[Natureboywhooo]

@beowulfbowsie your my fucking hero, its people like you who get my respect in this cruel world!

[LucaBlightBadass]

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

[amandaatpowerhouse]

i was diagnosed with type 4 after i had a double brain anuerysm rupture and 3 massive strokes...

[Nasiaaaa93]

i have also the ehlers danlos sydrome :/ type IV .. I know that's difficult by i try to live with my problem..

[Wolverineeeeeeee]

Great video! I just got diagnosed but when I look back on my childhood I can see why I always got hurt when I played sports or even just moved the wrong way. My dad always told me that I was over reacting but when he would get a dislocate then it would be "I'm going to die". He won't even get tested for it but I know he has it because my mom doesn't and he is always having problems.

KT - Type 3

[kaggyx]

Thanks for reminding me I'm not alone in this.

Roy - Type IV

[cheshielynx]

Thank you!

~Stephanie Lowry: EDS Type III

[darklink223456]

ive got the hypermobility part

its not that bad to live with

its kinda annoying sometimes though

[HazelLangford]

You're obv one of the lucky ones :)

[vivisonga1111]

keep raising awareness!!!!!!  :) im a fighter!

[capjanie]

I have 2 types of the syndrome, really elastic skin and hypermobility. I'm only 15 years old but I'm doing great the doctors say. I'd probally get the normal living age other people also have. Awesome video !

[poetrygal1]

Great video!!!!!! Thanks for raising awarness-God bless you! --Cindy

[ExplosionArts]

I never heard of this syndrome, but now I will be sure to spread the word of it.

[renoscoe]

Great video, thank you for putting it together to help people understand Ehlers-Danlos syndrome.