Due to the fact that EDS is rare and many times doctors don't know about it, it is always a good idea to have a packet of info on hand to share with new doctors or for emergency situations. With that said, I thought I would help out by posting a list that I have collected over the years of various EDS websites that you might find helpful for your own information or for use in informing another doctor/family member/teacher/etc. These sites are entirly independent of this one, so there is no responsibilty for what may be on them... they are just sites that, I personally, have found to be helpful.

Ehlers Danlos National Foundation
http://www.ednf.org/

The Hypermobility Syndrome Association
UK Based. The Hypermobility Syndrome Association (HMSA) is a charity run by and for people diagnosed with the Hypermobility Syndrome (HMS).
http://www.hypermobility.org/

EDSkids
This is a forum for children, teens, and young adults to talk about their daily lives with Ehlers-Danlos Syndrome.
http://edskids.net/forum/

eMedicine: Ehlers Danlos Syndrome *I find this one to be EXCELLENT in providing good info for doctors*
An in depth overview of EDS, geared toward medical professionals
http://www.emedicine.com/ped/topic654.htm

EDS Support Group UK
http://www.ehlers-danlos.org/

EDS Support Group Message Board
http://www.ehlers-danlos.org/messageboard/index.php

Ehlers Danlos Syndrome
Information on Prognosis and Impacts, Incidence and Risk Factors, Symptoms, Diagnosis and Evaluation, Management and Treatment, Coping.
http://www.orthop.washington.edu/uw/ehl ... fault.aspx

EDS Today
http://www.edstoday.org/

Ehlers-Danlos Syndrome
Mayo Clinic information
http://www.mayoclinic.com/health/ehlers ... DSECTION=1

MedlinePlus: Ehlers Danlos Syndrome
A list of basic websites concerning EDS
http://www.nlm.nih.gov/medlineplus/ehle ... drome.html

National Organization for Rare Diseases and Disorders
http://www.rarediseases.org/search/rdbd ... 20Syndrome

Ehlers Danlos Syndrome Teens
A support group for teens and young adults with EDS
http://health.groups.yahoo.com/group/eh ... ome_teens/

Ehlers Danlos Syndrome Network CARES
http://www.ehlersdanlosnetwork.org/Home.asp

POTS_NCS_Dysautonomia
A support group for those who are afflicted with the health condition POTS, NCS or any other kind of Dysautonomia. (EDS has been linked to Dysautonomia.)
http://health.groups.yahoo.com/group/PO ... autonomia/

Neat, Kelly!

good stuff kelly. thank you.

Your welcome.... I love your new avatar!!

Thanks Kelly! (And thanks for adding the Dysautonomia site as well, you didn't have too!)

Gwen, its a relavent link for EDS'ers and you have started a great support group and there are a lot of people on there with great advice. It would be a shame not to include it

I guess you're right lol since you put it that way.

Woohoo! I just finished my own packet of info! Those links really helped, thanks so much!

I just hope I included everything that needs to be included. I made it very "doctor friendly"...like highlighting pertinant information. (heh...small words, short sentences...j/k ) But no joking on the hightlighting.

Okay, I'm babbling. Thanks again!

*hugs*
Kelly

I just wanted to say hi. I am new to this forum. I was diag. with EDS back in 1989. I felt like a freak at first as there were 15 Drs in my room watching me bend in ways most had never seen. ANyway, thank you for all of the links. I am going to a new pain control Dr tomorrow which always scares me. In my cae, most Drs that I have seen act like there is really nothing wrong with me since they do not know much about it.

I will be printing out the info. you gave.

Thanks again..

Welcome, Kris! I'm glad that you find these links helpful. I hope your apt. goes well!

Thanks for all the great links.

I think I'll share some of this info with my dad who swears I am not hurting as much as I say I am.

bump

Kelly i should PM you the GeneTests article on EDS...my doctors LOVE IT.

23 pages of HEDS summary...like seven of CEDS stuff...it's awesome!

I just found this site while using GoodSearch and added it to the links...

Ehlers Danlos Syndrome Network CARES
http://www.ehlersdanlosnetwork.org/Home.asp

Cool! Thanks for all the imput guys... the more info the better!