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» Scarleteen Boards: 2000 - 2014 (Archive) » SCARLETEEN CENTRAL » The Randoms » "Ehlers-Danlos Syndrome"

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Author Topic: "Ehlers-Danlos Syndrome"
Kawani3792
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Has anyone heard of this, perhaps know people who deal with it? I went to a doctor yesterday and he poked and prodded a little, noted that I have very weak and slidey kneecaps, the skin on the back of my hand can be pinched and lifted about an inch and a half or so away from the hand, and is very stretchy, and I can touch the thumb of one hand to near the wrist on the same hand, which apparently is painful/impossible for most people.

I've searched this, read everything I can about it, and am very sure that I do have this (although I will not know for certain for a couple months, when the doctor I've been referred to can get me in for some testing) and at this point, don't see that this will particularly affect my life. Pregnancy could be difficult (well, yeah, I've never wanted to get pregnant, plus I'm gay which cuts down *a lot* on the chances of an accidental pregnancy), contact sports could be more dangerous (I've always disliked contact sports. They are painful. I've run track, played volleyball)...*has just realized that this is probably why she had purple bruises all over both arms after each volleyball practice when other girls with the same basic body shape, weight and level of fitness did not*.
Anyhow, I don't see that this would be particularly difficult to adapt to, as I've realized since I was young that I bruised very easily and have adapted to being careful already. But if anyone knows someone who is living with this, I would appreciate hearing some about it. Does it affect day-to-day life? If so, how? What sort of a job does that person have, do they need a brace of some sort to do that or are they able to get by? I went in to the doctor originally for a knee that has never recovered since I was on a trampoline, went up on two legs, came down on one. It's been six years since that happened. Has anyone you know gone through a situation at all similar?

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Heather
Executive Director & Founder
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Kawani: sorry this has just sat here! Alas, I don't know anything about this condition at all.

There is, however, a foundation for it with a lot of information that you might find useful: http://www.ednf.org/

However, I'd try not to self-diagnose, and would also not get too invested/involved until you do get a diagnosis, okay?

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Starfire&Shadows
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I have "benign" Hypermobility Syndrome. Which means I don't have most of the problems. But joints that go way further than they're supposed to - those I have.

So the advice I can give you is this - if you're hands hurt when doing certain things (especially handwriting - OMG OW!) Then there are hand or finger braces that can make all the difference. And if they can't get rid of the pain, you can request to do things by typing. Having hands that hurt all the time is not "just life". [Smile]

And, yeah joints can pop out of place or "go wonky" more easily, so watching my step, is a little more of a big deal for me. Also I've found that "going limp" reduces the amount of damage the joint takes - but this doesn't work if it would put any other part of your body in
harm's way.

Heather: Thanks for the link!

Kawani:
I hope your day/week or whatever is going well.

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Kawani3792
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Thank you for the link Heather! I have found that site, and it is very, very helpful. It has less technical language and more understandable than I've found anywhere else.
The original orthopedic doctor that I saw recommended looking it up, trying to find out some about it and see if any of it sounded familiar, as most of the diagnosis is just family history and symptoms. I'm researching this, but going with the thought of "Well, *IF* I do have this, this might explain a lot. *IF* I have one of these problems, then this one has the most symptoms that I've experienced, and the fewest that I haven't experienced." To hopefully avoid most of the issues of self-diagnosing (because I tend to be a worrier of the highest degree, and while I don't think I'm panicking, I'd rather avoid worrying about that altogether) I've been asking my friends and some of my extended family, all of whom have known me for years, even before my original knee injury that started this whole thing, if they think, for example, that I bruise/get injured easier than most people. Due to not knowing this for sure yet, nobody outside of my home knows I'm even going to be tested for it, so I just say that I'm comparing with some of my friends or whatnot.
I'm not particularly worried either way with this...I guess it's sort of a logic of "well, if it was something with a definite cure, I'd be concerned either way because I don't like medicines and pain, and most cures for physical things have pain. If I fit the signs of having a more dangerous form, I'd be concerned. But this...well, it won't change me either way. If I've got it, I've had it all my life and I'm not dead yet. It's just a name to explain my klutziness and funny bruises."

Hi Starfire! Thanks for popping in. I don't particularly have pain with handwriting, just really bad handwriting. Right now, my pain is centered around my knees and sometimes shoulders or elbows...larger joints. I expect either way, if diagnosed or not, I'll require some physical therapy or a brace, or else a sit-down job.
I have noticed that walking very loosely (if that makes sense) helps keep my knees from trying to kill me quite so much. That and a heating pad.
I'm doing reasonably well. My biggest problem at the moment is finding out that taking two ibuprofen only keeps pain away for a couple hours, and taking a stronger pill, again, only two hours. And the two ibuprofen or the one stronger pill is meant to last eight hours-I can't take any more for a good long while. Hopefully I'll be able to talk to my Physical Therapist this coming Wednesday and maybe get some stronger drugs-at this point, I've got near-constant pain, with occasional waves of debilitating pain.
I'm hoping I can be definitively diagnosed, yes or no, via DNA.

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Kawani3792
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I know this is an older post, but I wanted to give a quick update.

I was definitively diagnosed on April 1st (yes, April Fool's Day...my doctor was in fact a bit of a joking type, so maybe that fit!) as having Benign Hypermobility Joint Syndrome, same as Starfire.
From what I can tell, it's much like the Ehlers-Danlos Hypermobility type, except with less stretchy skin and more joint problems. It is going to be chronic, and the joint problems have been getting worse, but I've been prescribed Vitamin C (don't ask me why) and apparently (after a horrible, terrifying experience of having blood drawn...I have NEVER had blood drawn, and at 19 years old, I broke down bawling when the nurse pulled out the needle) I have a major Vitamin D deficiency (Hi! I sunburn! I don't like sun! Where does Vitamin D usually come from? THE SUN! ugh) so I'm now taking 50,000 units of Vit D, once every two weeks. It was going to be 10,000 twice a week, but that's a swallow pill, and while I can manage small pills, I tend to either chew up or avoid them if I can. I'm still going to Physical Therapy for my worse knee and taking a swallow pill for anti-inflammatory purposes, so hopefully this will all help and I can manage day-to-day activities.

I just wanted to give you an update on what was going on with this.

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