# Hypo half-sibling develops rare autoimmune disease



## Seraffa (Jul 14, 2010)

:sad0049: I feel sorry for my sister over in England.

I've invited her to this website, and am only posting so that other peeps know what to look out for, should they contract similar symptoms. Now that she's emailed me about it, I am "on the watch." (Both my mom and sis are Hypo; I am the only Hyper in the family.)

Dermatomyositis http://en.wikipedia.org/wiki/Dermatomyositis

NINDS Dermatomyositis Information Page 
http://www.ninds.nih.gov/disorders/dermatomyositis/dermatomyositis.htm

Please pray for my sister. Thanks ~S.


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## Seraffa (Jul 14, 2010)

I'm looking at the info - perhaps she was upset when she said "rare" disease, but it is very arthritic and lupus-similar, and not everyone gets it. Children under 15 can develop it,and it seems to be a "woman's disease."


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## Andros (Aug 26, 2009)

Seraffa said:


> :sad0049: I feel sorry for my sister over in England.
> 
> I've invited her to this website, and am only posting so that other peeps know what to look out for, should they contract similar symptoms. Now that she's emailed me about it, I am "on the watch." (Both my mom and sis are Hypo; I am the only Hyper in the family.)
> 
> ...


Aaaaaaaaaaaaaaaaaaaaaw; what a shame. It looks like it is a close cousin to Lupus.

You can count on my prayers for your sister. And please keep us informed of her treatment and progress.

And "you" take care of yourself also!


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## CA-Lynn (Apr 29, 2010)

About five years ago my friend was caught between a Dermatomyositis and Polymyositis diagnosis. In the end she "qualified for neither diagnosis and was given "Overlap Syndrome" as the diagnosis. All of these are connective tissue autoimmune diseases.

So I began researching and none of these is as rare as you might think. About 2000 people in the US have it [which, granted, is a very small percentage]. The problem is that few doctors have had any experience with these patients and many rheumatologists might never see a patient with this. Too, because they're not familiar with it other than a textbook, it's easy to miss correctly diagnosing the disease. That said, in the end they're all pretty much treated with the same drugs.

The best thing anyone with a connective tissue disase can do is to zero in on the diagnosis and get a rheumatologist with experience in this set of disorders. The best place to go is usually a teaching university with a medical school. Once you have a solid diagnosis and working treatment in hand then the disease can usually be maintained by a local rheumatologist.

My friend went into remission with Imuran and Prednisone. She had a relapse about a year later and this time is was that much easier to get her into remission because they knew what she had and how to treat it. She's been in remission for 4 years without any drugs at all to sustain it.

One suggestion I would give to your sister, regardless of her age: get a baseline bone density test and make sure her dental work is all up to date. The drugs used to treat connective tissue diseases are very hard on the bones.

Think positive thoughts. Correct treatment and a rock solid rheumatologist can be magical.


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