Re: new here/Gail

[Guest guest]

Gail ~ thank you very much for all of the information! I did read on

the SGS last night. No one has mentioned this, but we were only

seeing a genetics team due to voluntary participation in their study

for cranio... however, its time to get an appt with them and move on

to the clinic. We recently signed forms that will give them

permission to tell us the results if they find something. I did

email them on the EDS concerns ~ and the geneticist is reviewing the

info. There's just too much for it not to be. The more we thought

last night after mom read the sites, the more we " remembered " or

should I say we were reminded of things we all had, but sort of

forget about (if thats possible... hehe)... life for me: was

diagnosed with Reynauds in high school, was born with a club foot

that was successful treated with a series of casts, ketosis and

stridae (scarring issues are running in our family), and now a new

one born into the family in Feb is having lots of joint dislocation

issues ~ already! Anyhow, the SGS stuff seems to be much more

complex than what we have in the cranio arena and also we have

no " dactyly " issues... Anyhow, at least we're in touch with the

genetic counselor and got an email from her this morning saying the

geneticist is reading through my email and the info I'd sent.

Thanks for the note on the chiari group ~ it actually where I'd heard

it being mentioned and the more posts I'd read, I decided to search

and read more about it. I do enjoy Dr. B.'s posts too. He has such

humor, especially for a neurosurgeon.

Nice to meet you as well. Sounds like you guys have had a large

amount of stuff going on...hope everyone's doing well right now!

hugs~

Kaci