Ehlers-Danlos-Syndrome: Is this the answer to all the riddles?

[Karen]

It must be a relief to maybe have a diagnosis that might explain it all, at least for your own sanity! And maybe there are researchers working on finding way to help it, which would be good!

[Kirsten]

It must be a relief to maybe have a diagnosis that might explain it all, at least for your own sanity! And maybe there are researchers working on finding way to help it, which would be good!

Yes, exactly; at least this would explain why I'm always feeling so ill and miserable and why I there are so many various symptoms and conditions...

[RICHARD]

Yes, exactly; at least this would explain why I'm always feeling so ill and miserable and why I there are so many various symptoms and conditions...

Wow, I am glad that you may have an answer.

I hope you don't have to wait long for the results to come back. Please let us know......

[Kirsten]

Yes, I will. I may get the results on Thursday, but I was told it could be necessary to send the tissue to another lab as the standard lab may not be qualified to do such rare tests. We'll see.

[momcat]

Kirsten,
Please know that my thoughts and very best wishes are with you. I hope you get the answers you need. As always, you can count on my full support. As you can, please let us know how everything turns out?

[Catty1]

Hi, Kirsten:

There are many online groups for different things - this one is called "Edsers" for people who have the syndrome: http://health.groups.yahoo.com/group/edsers/ You have to register for the group but it is free. Perhaps you can find one in the Yahoo groups in Germany if the diagnosis is confirmed. I have read a bit about it online in the last few minutes and it seems there are several different kinds.

A couple of more possible resources:
GERMANY

Deutsche Ehlers-Danlos Iniziative e. V.
Grauthoffweg 78
D-33758 Schloss Holte-Stukenbrock
Johanna et Gilles Guénot
[email protected]
Note: this association is primarily intended for patients affected by Ehlers-Danlos syndrome(s).

Deutsche Ehers-Danlos Initiative e.V.Cadolzburger Str. 119
D-90766 Fuerth, Germany
Telephone: 49-911-9733539
Fax: 49-911-9733529
E-mail: [email protected]


My prayers are with you.

[Kirsten]

Thanks for the links, Candace! I think I will contact one of these organizations in case Ehlers-Danlos will be confirmed.

Called at the doctor's today but they still haven't gotten the results from the lab; need to call them again in Monday. I'll keep you updated.