Type 7a are you out there?!

Im realy starting to get upset! I keep running in to all the conmen eds types and some eds type 7b. I need a type 7a because I got the vibe that I was nothing like a eds type b and in fact I am more than they know... UGH! God I HATE EHLERSDANLOS TYPE 7A!!!

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I'm sorry to hear how frustrated you are. If you have the patience to teach us about your condition, perhaps we can try to help you feel less alone. In my family there is plenty of frustration and exhaustion related to managing our EDS Hypermobility. But I find that we have many things in common with people with MS, fibromyalgia, and chronic fatigue syndrome. So when we discuss issues in terms of what is challenging us right now, we end up with more people who can understand and provide some helpful advice or prayers to see us through.

Do you have friends nearby who care about you? Perhaps you can start reducing your fatigue by enlisting them to help make you dinners. My friend turned me on to this really cool website at http://www.mealtrain.com/ where you can list up what you like/dislike, when you need meals, and your friends, family, school community, church family, neighbors, etc. can sign up to bring you meals according to the schedule you set up. I saw your post about dinner the other night, and maybe the real answer to "what to make for dinner" is the change the question to "who is bringing dinner tonight?"

Please teach us about what is frustrating you so that we can try to learn and help. That's why we are here.

You are in my prayers.

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Hi ~ Good thing to post as maybe this will catch someone's eye and they can respond to you -- but in one sense you have everything in common with the EDS'ers in having a genetic defect. For other's wanting a research article this one is pretty succinct in describing it
http://www.jbjs.org/article.aspx?articleid=24240

You can let me know if it's incorrect - but it sounds as if types A and B of the type 7 are clinically indestinguishable - and that some of us share a variation of the main descriptors in the other types like type 3 perhaps - the article talks about the gene and the collagen issues however and in type 3 we don't know which gene is responsible as of yet if I'm correct.

The typical clinical features associated with this syndrome include bilateral congenital dislocation of the hip; severe generalized hypermobility of the joints; multiple dislocations of joints other than the hip; muscular hypotonia; and hyperelasticity, fragility, and a doughy texture of the skin.

So as the prior writer mentioned this would be a prime opportunity for you to reach out and help educate your fellow EDS'ers - I kind of feel all the collagen disorders are in the same boat in a broad sense - often thinking and feeling compassion to the Marfans, Osteogenesis Imperfecta folks and others that are less mentioned here in the forums...

Hang in there -- one genetic counselor believed that I may have an HDCT that isn't even named yet (if it isn't EDS) -- so sometimes there is a lot more gray area than we're comfortable with - Hope you are doing ok!

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Hello,

I am researching your type on the internet. I found this: Ehlers-Danlos syndrome arthrochalasia type
Other names people use for this condition, Arthrochalasis multiplex congenita, Ehlers-Danlos syndrome cardiac valvular type
Ehlers-Danlos syndrome type 7A (formerly), EDS7A (formerly), Ehlers-Danlos syndrome type 7B (formerly), EDS7B (formerly)

UGH.. they have to keep renaming it.

Well, I am sorry you feel alone. I have both this and Carcinoid Cancer. The treatments combat each other. So, all the advice for one will hurt me for the other, so I cannot get support in that area. They just don't match. I am sorry you are feeling alone.. and I really hope you find someone since that is your goal.

I never bothered to try! The odds seem to hard, and I would get frustrated. I wish you the best and send many many hugs and thoughts of positive results.

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I was diagnosed at 3 years of age after cps came and took me away from my family because they thought i was being abused. my foster mom took me to a geneticist and they ran the tests. I was then returned to my family. I had hip displayasia when i was borne and they did this cool cool surgery to keep my hip in its place buy taking a bone graph and placing it across my joint so it would stop dislocating. just about all my joints are dislocated and deformed looking. My fingers are bent my toes are dislocated and bent my ankles are collapsed I had 7 back operations at 16 to fix an 85* curve in my spine and now i have a 35* curve. my bones break very easy my skin is soft, pliable, week, and you can see my veins. My eyes are kinda almond shaped and i almost always have to have some kind of surgery to fix whatever breaks. Not sure if cysts are apart of eds but i have many of them in side on my organs. allergies: allergic to about 30 medications pain killers included. I hyper extend just about anywhere in my body. I bruise so easy i look like i'm beaten if i bump in to a corner or play to hard with my kids. My heart is always at risk for a valve tare from the eds so i'm on medications to help prevent that from happening. As far a diet i fallow no plan. i see food i eat it. Pain... not so much as long as i don't push my self or hurt my self doing stupid things. Life wouldn't be life if you didn't test the waters tho. lol. I'm a kind person and forgiving person and a loving one too. I try not to judge people for any reason... however i am human. really im an open book if you have any questions please feel free to ask...

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