what you do think?

[Guest guest]

Beth,

Ask the Rhuemy or the Primary Care Dr to refer Hannah to the Genetic's Dr.

I did not have any trouble with getting into Genetics. Once in we

were even able to get my Niece checked out too. We used the one at Emory

Hospital which is on the same Campus as Egleston Childrens Hospital and

Clinics. I

was amazed at what we found out on .

I would do a search on the web with. Your state and the EDS and see what

it brought up. If nothing then try Child EDS and your state. Or a connecting

state.

Robbin

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[Guest guest]

Ok, so as I've said in several recent emails, Hannah is becoming more

hypermobile and having increase in pain in some joints (knees. elbows; hands &

ankles). I've been doing what I know how to do best, research. I keep coming

back to one obvious and one not as obvious conclusion. She fits very strongly

into an Ehler's Danlos diagnosis. There was one site I was on that showed

pictures of hypermobile people and said if you can do this and have joint pain

(it listed other symptoms that she fit too), you are more likely to have this.

Hannah easily did all the things in the pictures and more! The second, but to

me less obvious is one of the spondy groups. She has several, but not all of

the characteristics of that too.

So that brings me where I need help. Does anyone know how I find a doctor that

specializes in EDS? I went on our Children's website (not that I will ever take

her back there), but none of the doctors list that as something they treat.

Also does anyone know how easy it is to get referred to a genetics doctor. I'm

wondering if this would be helpful too.

Any thoughts?

Sending prayers & happy thoughts,

Beth :-)