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Genetic specialist for vascular EDS?

R

Raemacpherson

Messages
9
I am working to rule out CCI/AAI currently. I also have most of the symptoms of vascular EDS and read that a consultation with a geneticist should be considered. What type of geneticist? I have not had any luck finding a geneticist that deals with vascular EDS through my insurance.
 
M

Marley101

Messages
5
I see the geneticist Dr Brad Tinkle based in Indianapolis..he takes my insurance. Although I don’t have vascular EDS, (I’m hyper mobile) he’d be able to diagnose you.
 
F

Foxglove

Messages
82
In my area it's easier to find someone to take a vascular EDS patient than most other types of EDS, but I would still have to go to a big city where there's a university hospital.

I beleive you want "medical genetics" or "molecular genetics" or "medical and molecular genetics".

Once you find a geneticist, you can file an appeal with your insurance to cover that doctor, if they don't have anyone on the plan who specializes in what you have (or want checked).

(However, I don't seem to have vascular so I would have to travel quite far to get to anyone who would see me)
 
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