specifically:

SCN1A

It can cost up to $3000.00, did you get insurance to pay?

HOW?!?!

Having Epi write a letter so I can submit it to the local Rotary Club, any other ideas?

Do you live near a university hospital? Often they are doing trials there for testing. I along with my son went for genetic testing for Ehlers Danlos syndrome and while we were there we were told of all kinds of trials they wanted us to enter in. I chose a few just for the free medical care. Alas Tropical Storm Allison wiped it all out when the flooding struck the med center in Houston.

Hi Missy,
The best way to make sure that you are covered is to get a letter from the ins. co. stating that they will cover for all of this to be done. E runs in my family genes and I found out it was chromosone 20 that can cause genetic E.
Here's wishing you well and May God Bless You!

Sue

I had my doctor reply and plead to my health insurance because it was 100% necessary as a diagnostic tool. I ahve been in need of this for 3 years now and I just went. I finally got my diagnosis of a rare conditon called "Ehlers-Danlos Syndrome: Type III" which is a newly discovered diagnisis since 4 years ago. Through genetic testing, this was the only way to figure out my diagnosis.

Keep me posted ok??? I'd love to support you. If you ever want to PM me, go right ahead!!! I love getting PM's!!! I know that it's corny, but I still love it anyways
~ dance59326