Re: Greetings and intro :-) & all

[Guest guest]

,

Great to see you join , Eurico, & Amy, in also becoming a ceda

member.

There are many people on the Chiari list (i.e. wacma...World Arnold Chiari

Malformation Association: See http://www.wacma.com/ ), that have learnt

about an association between Chiari 1 malformation & EDS from the Drs. at

the Chiari Institute (TCI) in NY; some of whom have found they have EDS

too/wonder if they have EDS.

I'm so pleased to see you all join ceda to find out more, share your

experiences, knowledge, etc.

also mentions the Amercian Syringomyelia Alliance Project ( ASAP ).

See: http://www.asap4sm.com/Index.cfm , & please look around this site, if

interested in finding out more about Chiari & syringomyelia, which is often

abbreviated to just " sm " as has written.

Eurico has a great web site too...see:

http://www3.sympatico.ca/ejfs/chiari0.html You know how many of us had

great difficulty in getting an EDS diagnosis; unfortunately the same can be

true with Chiari. Some of you with EDS might have wondered about Chiari, but

been reassured you, or a family member, doesn't have this. Unfortunately,

this all depends upon your Drs " understanding " of what defines Chiari 1

malformation. The text books define Chiari by so many mms. of cerebellar

tonsillar herniation, which many Drs. still adhere to. Eurico's web site

gives great info. on Chiari 0/borderline Chiari 1 malformation. His web site

shows links that you may show no cerebellar tonsillar herniation i.e. Chiari

0, yet have Chiari. Well worth a look at.

Welcome to the ceda family, ,

Gail

North Yorkshire, UK

HEDS

Eldest daughter: HEDS

Son: Marfanoid HEDS, Chiari 1 malformation & syringomyelia