Ehlers-Danlos Syndrome Support Group

Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.

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Trixxy1 05/25/2013

all of my life ive had problems that doctors look at and just say "i dont know" or "that doesnt make sense"
i used to get horrible pains in my legs, so bad that i couldnt walk when i was younger they always told me they were growing pains, but im 25 and still 4ft 9in tall.
I would get bad infections all the time as a baby and even though i was born 2 weeks late was only 5lbs 13oz and had super flat feet. i had to wear special shoes.
I remember showing all my friends in grade school my cool tricks, i could pop my hips in and out dislocate my jaw and put it back, touch my thump to my wrist and turn my wrist almost 180 degrees.
I was always super flexible.
i played alot of sports growing up, ive jammed and dislocated every finger multiple times, it got to the point where i was so used to it id just reset it myself and get back in the game.

now that im older and had 2 kids everything is worse. my joints hurt all the time, especially my knees and back. ive got bad carpal tunnel and my muscles lock up. my hands and sometimes whole body go numb and tingly.
i get chronic migraines and vertigo.
some nights for no apparent reason ill spend all night sick in the bathroom.
ive notice other weird little quirks too
caffeine has the opposite effect on me. it puts me to sleep, where as stuff like benadryl and vicodin give me more energy.
i dont respond to most pain meds. i got stitches once and they gave me 4 injection to numb the area and i still felt everything, i could tell her the temp of the needle and everything. i remember telling the doc, 6 stitches huh? she asked how i know i said i felt the needle each time, i could even feel the string pulling through.
i have a hiatal hernia that i guess i was born with but didnt find till i was pregnant and thought i was having a heart attack.
my last pregnancy almost killed me. i had so many complication, he had to be delivered early because the placenta was tearing.
i have the memory span of a goldfish.

any of these things hitting home with anyone else?
how long did it take for you to get a diagnoses?
how do you go about it?

deleted_user 05/25/2013

yes, many of those symptoms can be caused from Ehlers-Danlos Syndrome. Most doctors are not familiar with it so getting a diagnosis is often difficult. Some things I've learned from my father or instinctively anyway, like that good posture is very important to maintain. There are some good informational pages and sites that you can use and share with caregivers. There is a national foundation that is a good resource.

Meanwhile, take good care of yourself, your teeth, do moderate exercizes to strengthen core muscles especially, us arch supports, ankle supports, back braces, wrist braces as necessary from the drug store, but don't depend on them as you need to mostly use your own strength. Use the braces when doing heavier work.

Is there anyone else in your family that has these symptoms?

deleted_user 05/25/2013

Here are some of the links:

http://www.ednf.org/

http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome

http://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome

http://www.ehlersdanlosnetwork.org/typesofehlersdanlos.html

There, for starters. There are more articles that have been posted here that you can use also.

Trixxy1 05/26/2013

my mom and one of my brothers are also very tiny, bother has terrible knees at 20 and my has had carpal tunnel and khrones surgeries. same with another cousin. Thank you for the websites! I will through them and high light some stuff and take them to my next doctors appointment

deleted_user 05/26/2013

I don't know why that says 'short', cuz I heard most of us are tall and thin. that's a good question.

GenuineMystery 05/26/2013

Carpal tunnel seems to be more common in people with EDS than among 'normals.' Crohn's - probably some overlap with the syndrome, but that's based on very little data. In the Vascular type of EDS, people are more likely to be short than tall, but I think other types of EDS occasionally can make people short. No early, sudden deaths from medical causes in the family?

Trixxy1 07/06/2013

Most of the men on my moms side have died in their 50's-60's from what i was told is heart attacks. its always their 1st one, and its always a killer if they have one.

deleted_user 07/06/2013

hi, trixxy. How are you doing?

GenuineMystery 07/06/2013

Uh-oh. You need to look up Vascular Ehlers-Danlos Syndrome.

deleted_user 07/06/2013

The people in my family who have it usually die in the 60's also. It seems that our systems are weak when we are young, and when we start to age the bottom falls out.

GenuineMystery 07/07/2013

The semi-official word on lifespan is that it's not shortened by EDS, at least excluding Vascular and maybe crossover types. I've never believed that - too many ways the disorder could indirectly cause death. One doctor who is well-known within the EDS community seems to think Ehlers-Danlos Syndrome makes heart failure more likely. Still, a bunch of sudden deaths in the 60's or earlier sounds like VEDS to me.

deleted_user 07/07/2013

deaths from vascular eds usually occur much earlier, like in the 30's. Some think that the other types don't have vascular symptoms at all, but they do, just not as extreme.
I'm spending a lot of time now on the EDNF inspire message board, which is very active. There are a lot of dysautonomia things, pots, and digestive tract things. I think the external hypermobility things, like bending a thumb to the wrist, distract from the more subtle things like chronic constipation, and low blood pressure, and degenerative discs.

I found out why some EDS'ers get diagnosed with MS instead... because the hypermobility of the neck results in wearing of the myelin of the nerves which results in same symptoms. Now, why the neck problem is allowed to go that far because of lack of proper diagnosis is problematic.

The people in that group, like us here, are trying to figure thngs out for themselves due to ignorance of medical professionals. Some of those people are getting to weird conclusions. I think we all should take courses in anatomy and physiology.

I have a heart problem now.. right bundle branch block, and pvc's. Why?

It's got me kind of depressed again. All the suffereing that is unnecessary because the people could be helped better if doctors were more knowledgeable. All forms of this affect the whole body, just some to a more severe degree.

I think I posted the EDNF screening chart, but here it is again:

http://www.ednf.org/documents/EDSinPracticeS.pdf

GenuineMystery 07/08/2013

I agree that hypermobility distracts from other issues, and I wish I knew why EDS seems to affect internal organs very differently in people.

MS-EDS confusion from damaged cervical nerves? Okay, I have those (with a few finger flare-ups in the pasts), but shouldn't doctors who know anything about MS know enough to rule out the neck as the problem?

I don't believe that VEDS usually causes death before middle age. It would be very maladaptive if so and very self-limiting by inheritance. I've heard of multiple middle-aged people with VEDS, some of whom probably haven't had any life-threatening events. The trouble with the Vascular type is that diagnosis is most likely after an event, sometimes posthumously.

Meanwhile, I got a large mystery scratch on my leg yesterday while wearing pants. I didn't feel anything as it happened, but if this were 1900, I'd be at a slight risk of eventual death from infection.

deleted_user 07/08/2013

You can believe what you want, but y9ou must admit that you are hardly expert. Here is a quote about life expectancy in Vascular EDS:

"About one in four people with vascular type EDS develop a significant health problem by age 20 and more than 80 percent develop life-threatening complications by age 40."

http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome

The prognosis of Ehlers-Danlos syndrome, vascular type, is grim but there is wide interindividual variability and life expectancy is best among patients receiving regular follow-up. Management by an experienced multidisciplinary team, implementation of drastic prevention measures and, depending on the results of the BBEST study, the possible prescription of beta-blockers should help to reduce the risk of complications and justify hope for a real improvement in prognosis in the near future.

http://www.ncbi.nlm.nih.gov/pubmed/17159712

Life expectancy in the Vascular Type (formerly type lV) is generally shortened to around 40 years due to the rupture of large blood vessels and the major organs.

http://www.ehlers-danlos.org/index.php/what-is-eds

deleted_user 07/08/2013

I'm not expert either. I look all these things up.

You made a good point about if death occurred very young that the people would not have procreated, but by the end of the 30's most people have had children already.

GenuineMystery 07/08/2013

I admit I am not an expert, but that research still suffers from the flaw of focusing on people who have been diagnosed. Also, while most people are done having children by their late 30's, offspring often are quite dependent on parents for basic life needs into the parents' 40's (which pertains more to fathers, who usually are older than mothers) After writing those lines, I found mention of a study indicating a longer average lifespan than that.
http://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/type-4-and-life-expectancy/

Now I'm curious about whether women with VEDS don't usually outlive men with it, unlike women vs. men in the general population.

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