Ehlers-Danlos And Autism

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I have never heard of this connection. My skin tends to be quite soft and elastic, and I have pretty flexible joints; but not to the degree of EDS that I am aware of.

One of my best friends has vascular type EDS, and I have often suspected she has aspergers due to the way she relates socially. Before either of us knew anything about aspergers or autism, we would joke that we had the same brain.

She is getting to the point where, due to the weakness of the connective tissues, bones are collapsing on internal organs and cannot be surgically repaired, also bleeding from smaller vessels internally. Sadly, vascular type EDS folks do not have a long life expectancy; and because of the severity of her symptoms, she probably does not have much longer. I am going to miss her so much. I don't have many people with whom I share a brain.

[quote="AuroraBorealisGazer

Yes, my body would like if it translated into a treatment too. But for now, awareness means reaching more doctors and medical professionals, since most don't know what to do with us. It also means that if we can get to the point where EDS is as well known as things like MS or Lupus, there might eventually be a push for more research (which could lead to breakthroughs).[/quote]

Do you have EDS? Do you mind giving more details? I would be interested to hear--as I said, I only know what my friend's experience has been and hers is a severe case.

I was wondering what type you have; how it affects your life; what your prognosis is. Have you needed surgery for it? In my friend's case, she had back surgery at a young age due to spinal issues, and abdominal surgery in her mid 30's for a complete hysterectomy due to bleeding and pain. When the dr did the hysterectomy, he also found blood vessels tangled in her bowel that were bleeding and causing all kinds of problems.

Even on a good day she lives with pain. All the time.

Just wondered what general things you have to say about EDS--as I said, I don't know anyone else who has it, at least not that I know of.

My 17-year old sister has both Ehlers-Danlos syndrome and autism as well as Dyspraxia.

^ My geneticist didn't conclude which type I have (he's not one of the EDS experts, of which there are very few), but based on the characteristics of each type, I'd guess either type 3 or type 4 (I have very translucent skin/iffy on facial features). I've been fortunate to only need two very minor, commonplace surgeries prior to diagnosis (both of which I had bad reactions to) and post diagnosis my orthopedist is smart enough to know not to operate on my joints.
*For reference, I'm in my 20s.*
It affects me greatly, unfortunately. Like your friend, pain is a daily thing. If I were to go off the pain scale (that doctors seem to rely on so heavily) I'd say a really good pain day for me is at a 5. Most of my joints dislocate and sublux, and it's typically a daily occurrence. Luckily without even realizing it, I've gotten pretty good at putting them back into place, so I haven't had to seek medical assistance in that regard.
I also have a lot of the comorbidities that many EDSers carry, which add to the problem.

Yes, I have considered making the trip up to Baltimore to see Dr. Francamono in her new EDS center. There's also Dr. Tinkle in Chicago (they are the two big experts on EDS, whom I referenced in a previous comment). They both have a very long waiting list; for Dr. F it's about a 1.5-2 year wait last I heard. One of them would be able to determine which type I have.

If your friend hasn't done so already, there is an online EDS group at Inspire.com (the EDNF site links directly to the forum) that she can join. The people there are very knowledgeable and have good suggestions.

I have Ehlers-Danlos. Mine has progressed to needing to leave a job I love, as I can no longer work. I own a power wheelchair and have spent months in it, but I can currently walk. I had a stroke at 33 and I'm currently seeking diagnosis and treatment for Mast Cell Activation Syndrome (a common co-morbid condition with EDS).

I've been hospitalized for malnutrition and been on elemental diets. About 2 months ago, I was hospitalized and scheduled for a port to be placed to receive TPN (IV nutrition). The doctor tried a "Hail Mary" and got me eating some foods again while taking vast quantities of antihistamines. ...but, that is no longer working and this week I haven't been able to eat *anything* without needing a rescue epipen.

I have a GI specialist at Northwestern who I will see in mid January. I'm hoping she will have some solutions for me.

I hope so, too.