new here

[Guest guest]

Hello.

Well, I'm new to the EDS arena, although the symptoms and issues have

been very familiar to my family as long as any of us can remember.

Actually found EDS being mentioned on another yahoo group ~ so was

curious and decided to read more... symptoms and issues reak of our

family.

My kids and other family members have several conditions ~ although

no one knew about their diagnoses and issues until after our kids

were diagnosed by doctors at s Hopkins (no one in Ohio knew how

to help them). The kids have chiari malfomration type I that was

actually caused from their primary condition of craniosysnotosis

(early skull fusion of the infant sutures)... any one here heard

know of someone with EDS and cranio? Anyhow, there's so many people

in our family that their skulls were not treated for the cranio that

the genetics team at Hopkins wanted everyone's blood since they are

in the middle of a big cranio study. They have been insistant that

at least our son (if not more of us) have a syndrome, but nothing no

one has actually labelled yet. I think even some of the issues or

characteristics of EDS we didn't even discuss with them as they've

been our normal. LOL. in fact, some of the images we looked at that

are characteristic of EDS ~ we all laughed and said ~ what

is " abnormal " about this that is characteristic of this syndrome?

hehe. Some of us in the family are much more mild than others. I've

emailed the genetics team about stumbling onto EDS and all the

qualities most of us have in the family ~ and their thoughts...

haven't heard back yet. There is an aritlce on PubMed that says EDS

is linked with cranio, but the article is dated 1974, and is in

French, which I don't speak, lol. Maybe outdated? Just too many

things are starting to link together ... finally.

After all the reading I'm doing ~ is it a fair guess to make that

generally EDS is diagnosed through some sort of genetic testing ~

like mostly skin biopsy's? ouch! Austin may have to have another

cranio surgery this summer ~ at which point skin could be taken then,

but was wondering how EDS is officially found and diagnosed?... or is

it mostly based on clinical observation, etc.?

Well, am still reading up on EDS... seems like its all hitting close

to home and all of our familiy issues are too coincidental ~ this is

just the 1st place I've ever found reading most if not all of them in

the same place.

Sorry for the lengthiness ~ I guess after all that ~ I'd be most

curious if anyone knows of anyone with EDS and craniosynostosis and

how EDS is typically diagnosed.

Thank you,

Kaci

Ohio, USA