Re: EDS, Marfans, Sticklers Bloggers...

[Guest guest]

Very interesting and informative web site. Gave me great insight just

watching a few videos.

Rochelle

>

> Hello all

>

> I have started a blog with hopes to support other blogs addressing

the

> genetic connective tissue disorders: EDS, Marfan and Sticklers.

Many

> people with these disorders have arnold-chiari malformation and

other

> neck issues; thus my reason for announcing the blog here.

>

> Please stop by and let me know what you think

>

> http://invisibleglue.blogspot.com/

>

> Invisible Glue

> A prompt driven site to inspire those with Ehlers-Danlos Syndrome,

> Marfan Syndrome or Stickler Syndrome; to express... to

communicate...

> to share.

>

> What is this site?

> If you are a person with a genetic disorder of collagen (Ehlers-

Danlos

> Syndrome, Marfan Syndrome, Stickler Syndrome) this is a place to

> express yourself. Whether you are an artist, a poet, a

photographer; or

> just wish to write short stories, rant, rave or explain -- you are

> invited to join in on the weekly prompts and share your thoughts on

> these disorders. ...

>

[Guest guest]

Rochelle

Thanks for the feedback. My hope is to get other bloggers talking on

their own blogs, creating a sort of hub of bloggers who talk about one

similar issue which will grow into a collection of information which

people can research. If I can't pull it together I will either expand

it into a different kind of site, invisible disorders, or arthritic

disorders or something along these lines.

Thanks again for your interest and feedback

> http://invisibleglue.blogspot.com/

On Sunday, December 16, 2007, at 05:15 AM,

neck pain wrote:

> 1a. Re: EDS, Marfans, Sticklers Bloggers...

> Posted by: " Rochelle " rccoc1977@... rccoc1977

> Date: Sat Dec 15, 2007 6:39 am ((PST))

>

> Very interesting and informative web site. Gave me great insight just

> watching a few videos.

>

> Rochelle