New ceda members/Judith, Bernie & Robin

March 17, 2004

Pleased to " meet " you all,

Judith, thank you for being so willing to help others; you're an asset to

our group already I see.

Bernie, just change the words you wrote a little, & that's our family. I'm

50, we have a 17 year old son, diagnosed with the hypermobile type of EDS in

2002, as was I. Our son also has a marfanoid habitus, & now has a diagnosis

of " Marfanoid EDS. " The understanding appears to be that there can be an

overlap between the different types of EDS, so you can have features of the

hypermobile type of EDS, & the classical, or vascular types of EDS, for

example.

Altho' our family has the hypermobile type of EDS (including our eldest

daughter, who is also a ceda member), we also have features of the Vascular

type. There also can be an overlap between EDS & other connective tissue

disorders, such as Marfan syndrome. Hmm.. I've passed this on to our

children, & was adopted as a baby...so no family history. Sorry I can't

answer your queries, but wanted to let you know that we all share similar

problems. Might I ask what is the " neuropathy " that you mention?

Robin, I'm wondering if you're also a member of wacma. I saw your post to

this list, then saw a post to wacma from a Robin Dawson. I hope I'm

remembering correctly that you wrote your daughter was born with a club

foot/talipes. Apologies, but our ISP has been giving me problems for nearly

a week, & today I eventually received a host of e-mails all jumbled up from

11th March to today, & I'm trying to make sense of these. Our son was born

with bilateral talipes equino-varus. He has EDS & also Chiari 1 malformation

& syringomyelia. Do you have Chiari 1 malformation? If so, do you know there

is an association between EDS & Chiari?

By way of introduction, I'm in the U.K., & trying to raise awareness of the

association between EDS & Chiari 1 Malformation; a paper on this association

awaits publication,

Gail,

North Yorkshire, U.K.

HEDS

Eldest daughter has HEDS

Son has " Marfanoid HEDS, " Chiari 1 Malformation & syringomyelia

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