Ehlers-Danlos Syndrome.... Nothing Hurts in my World.

I made this small piece about Ehlers Danlos, a connective tissue disorder. Sadly, many children and adults go on for years suffering from this painful condition before a diagnosis is made. This is a life long disabilitating condition that causes chronic pain and injuries from sublaxations and dislocations. I
n severe cases it is life threatening. Only a handful of doctors worldwide are experts in this condition and despite it being a joint and muscle condition, the majority of the worlds Rheumatologists fail to diagnosis this time and time again.
Many parents of child sufferers have been investigated for child abuse due to the bruising and constant injuries their children endure, just adding to the trauma. Adults have gone from doctor to doctor, and many end up in the hands of mental health deemed to have psychological problems for an imaginary condtion. There is a simple diagnosis proceedure initially, that is a good indicator that Ehlers Danlos, especially the Hypermobility type could be the problem, why is this not being done?

Music: Nothing Hurts by Catatonia

No copyright was intended by the use of this music which can be purchased from any reputable music shop or downloaded for a small fee from any legitimate online music site.

ps: This is one of my early videos and I know it runs a bit fast for some to be able to read, appologies for that x

Category:

Nonprofits & Activism

Tags:

• Medical
• Joints
• Bones
• Muscles
• connective
• tissue
• dislocation
• sublaxtion
• medical
• Hypermobility
• Ehlers-Danlos
• GOSH

[Elfins]

Thank you so much for all your coments, lots have happened since I made this video which was one of the first I ever made and I was so green then. I will try and re-do it and slow the writing down. To all suffering with Ehlers-Danlos, you have my empathy and heartfelt understanding, to all carers, hang in there xxxx

[brucegunn]

I wish the words didn't go by so fast. I keep having to stop it just to read everything.

[Elfins]

@brucegunn

Yes, sorry about that. It was one of my very first video attempts when I didnt really know what I was doing. I left it up as it was getting good comments but I should really re-do it and slow the writing down.

[milib0y]

hey elfins is all this info on this vid frm wikipedia?

[Elfins]

I had to go to Wiki to check what you were talking about and was impressed, as yes it looks really similar however its not the same as mine. My video was done a long time ago, some info taken from medical sites, some from knowledge of my own. But in answer to you, no I didnt take the info from Wiki.

[svlester]

I got EDS but i dont have a serious type or i didnt think it could be this bad. i didnt know this many ppl have it as well

[Elfins]

There are many with Eds worldwide, some are only mildly affected, some moreso. Thats whats so incidious about the condition, there is no set rule or path, all are different yet similar.

[ITSONLYMEWATCHING]

@AmericanskBlatte

There is nothing that will make the pain go away and I'm sorry to say it, but it will just get worse. As a kid, I was the life of the party,doing all the cool stuff with my joints, now I'm paying a hefty price, I'm on Methadone, Soma, Fexeril,and Mobic for the pain and muscle aches and my bad days out weigh my good.

[jonnysthedude1]

Good information, nice one. I have type 4 and have just had my 50th , so not all depressing.

[AmericanskBlatte]

fuck. my. life.....i just found out i have this shit....can anyone recommend some sort of physiotherapy or conditioning so that the pain can go away? there has to be something...this is bullshit...

[zipperedzebra]

Elfins, If you could slow it down so we could read and digest the information, and if you would correct the misspelled words so credibility could be maintained, this would be a very powerful vehicle for teaching the public about EDS.

[paintedchicken]

i once got told "de mind it can do funny tings.." Can you imagine? Got dx'd when i was 37. Been tearing ligaments and subluxing/dislocating since i was 7.

i am type III and the next doc who says it is the "lucky" one i will kick him/her in the crotch. People (docs included) don't realize that the categories are our inventions.. the disorder doesn't care. So i have type III with features from some of the other types.

that said.. i do ok. i am a fighter and i will have a decent life

[paintedchicken]

where did the song come from? It isn't music i'd normally like, but it has stuck in my head.

[cheshielynx]

Bless you for being such a supportive mother to your daughter. I have Type III EDS, my mom who's EDS is much more benign makes me feel like its my fault for hurting all the time.

Blessings to you and your daughter.....

[adriano900]

Good video , i have the hypermobility type , but by chane i made examination on my heart and i found out that i have mitral valve prolapse with trivial MR :(