Proof of EDS?

Someone asked me if I could show "proof" that I do, indeed, have Ehlers Danlos Syndrome. While I do think it's a valid concern, I am NOT going to purposely dislocate my joints as that can be very dangerous and there is the possibility of the joint not going back in and I'd have to call the ER. Not how I would like to spend my day. So, instead, I will show some minor things that I can do with my hands and skin, which isn't all that impressive, but it's all I can really do without hurting myself and a big part is that my back is twisted due to an L5 being out of place and my hips being rotated in opposite directions. The only other thing I can show is the clinic notes from my Geneticist. If that's not proof enough, then I don't know what is

Category:

People & Blogs

Tags:

• Ehlers
• Danlos
• Chronic
• Illness
• EDS

[bentleyhants]

I was wondering why you were diagnosed with EDS and not Marfans as a lot of the symptoms which you present occur in both...?

[DarkWaterfall]

@bentleyhants While I do have a slight "marfanoid habitus" I don't meet the requirements for Marfans. My armspan is slightly longer than my height but it isn't significant enough to be considered for Marfans. Same with the rest of my body ratios.

[shanaki90]

everybody can do that thing with the nose and ears -.-

[DarkWaterfall]

@shanaki90 Actually, no, not everyone can do that. Sure most can at some level, but mine stretch much further than most.

[libbydeland]

Wow I was diagnosed with it when I was born. My mom pinched my and said...."yep she got it". It Is a lot of times genetic.... I thought it was genetic in till I saw some of these comments about people being diagnosed with when the were near their teens and twentys.

[DarkWaterfall]

@libbydeland it is genetic. Most of the time the reason people are diagnosed later in life is because it was misdiagnosed as something else, or simply missed altogether. EDS is a rare condition and not well known even in the medical profession. I've had it since birth, but was only diagnosed at 25. I was treated for undifferentiated arthritis for years and years before finally figuring out that it was EDS.

[Angel101932]

I also have EDS (Mine's Type 3) and might have POTS as well. I was diagnosed with EDS last Friday but started showing signs in November. (I just turn 16 in February) I'm going to get check out on March 24 to see if I do have POTS.

I was wondering though, How do you deal with EDS? When did you decide to fight it?

[abistaff]

I also have EDS and set up a blog to raise awareness about EDS and invisible disabilities. Copy and paste the following into your browser hideandseekdisabilities.blogsp­ot.com

[shiversoner69]

ur really beautifulll:)

nottrying to hit on u or nothin or be a creep just thought u should know ur beautiful:)

[CocoaBeansXoX]

Wow, I totally remember my friends doing these "tricks" as they called them as kids. I would try, but I wasn't able to. Guess they aren't always good tricks after all...

[darkenlight22]

You know better then over extending. Proving it to them just hurts you. I know only safe one was skin and you didn't try and freak them out good girl. I haven't even come to terms with showing people what are skin really does yet ether. What they can't see won't hurt them right. Be safe XXXX oh could have used more cowbell everything needs more cowbell. :D

[timmay6921]

My husband was diagnosed yesterday, and we have an 8 year old daughter......wondering about her now........

[nass1401]

o mg i have all these but much mores

does this mean i have ed

i have 2daughters (6&3) older girl is very weak

how can be sure we don't have good hospitals or doctors

[synchrosk8ter4]

i can move my thumb to my forarm and im female