Ehlers Danlos Info Links List
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kmoncky
Plastic Spoon
Joined: Wed Mar 29, 2006 5:38 pm
Posts: 3314
Location: California, US
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 Ehlers Danlos Info Links List 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/
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EDS type 3, Obstructive Sleep Apnea, Fibro, Hypothyroidism, Bipolar Disorder, IBS, tendonitis, bursitus, TMJ, OCD, MVP, POTS and some other stuff
"All doctors are guilty until proven innocent!"
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| Thu Oct 12, 2006 7:58 pm |
  
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Linz
Message Board Host
Joined: Sat Jul 02, 2005 8:08 am
Posts: 9945
Location: Newbury, UK
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Neat, Kelly! 
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Linz
Fibro, Hyperlordosis, HMS and accompanying baggage
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| Fri Oct 13, 2006 2:53 am |
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lulu40
Dessert Spoon
Joined: Wed Mar 22, 2006 9:47 pm
Posts: 669
Location: Canada
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good stuff kelly. thank you.
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Lulu
SLE and FMS
"Not everything that counts can be counted, and not everything that can be counted counts." Albert Einstein
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| Tue Oct 17, 2006 7:02 pm |
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kmoncky
Plastic Spoon
Joined: Wed Mar 29, 2006 5:38 pm
Posts: 3314
Location: California, US
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Your welcome.... I love your new avatar!! 
_________________
EDS type 3, Obstructive Sleep Apnea, Fibro, Hypothyroidism, Bipolar Disorder, IBS, tendonitis, bursitus, TMJ, OCD, MVP, POTS and some other stuff
"All doctors are guilty until proven innocent!"
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| Tue Oct 17, 2006 10:29 pm |
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TheDysautonomiaGirl
Message Board Host
Joined: Sat Jan 07, 2006 5:18 pm
Posts: 6372
Location: Pennsylvania
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Thanks Kelly! (And thanks for adding the Dysautonomia site as well, you didn't have too!)
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Gwendolyn
~21~
POTS & NCS, Ehlers- Danlos Syndrome (Hypermobility & Classical), CFS, GERD, Fibromyalgia, Gastroparisis, Costochondritis, Pelvic Floor Spasms, Type II Diabetes, & Hypothyroid
"Be pushed by your dreams, not held back by your illness!" -Me 
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| Tue Oct 17, 2006 11:14 pm |
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kmoncky
Plastic Spoon
Joined: Wed Mar 29, 2006 5:38 pm
Posts: 3314
Location: California, US
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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 
_________________
EDS type 3, Obstructive Sleep Apnea, Fibro, Hypothyroidism, Bipolar Disorder, IBS, tendonitis, bursitus, TMJ, OCD, MVP, POTS and some other stuff
"All doctors are guilty until proven innocent!"
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| Tue Oct 17, 2006 11:20 pm |
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TheDysautonomiaGirl
Message Board Host
Joined: Sat Jan 07, 2006 5:18 pm
Posts: 6372
Location: Pennsylvania
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I guess you're right lol since you put it that way.
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Gwendolyn
~21~
POTS & NCS, Ehlers- Danlos Syndrome (Hypermobility & Classical), CFS, GERD, Fibromyalgia, Gastroparisis, Costochondritis, Pelvic Floor Spasms, Type II Diabetes, & Hypothyroid
"Be pushed by your dreams, not held back by your illness!" -Me
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| Tue Oct 17, 2006 11:22 pm |
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sxydrumbabe
Baby Spoon
Joined: Wed Mar 29, 2006 3:46 pm
Posts: 427
Location: Cave Spring, GA
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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
_________________
~Kelly~
22 yrs old
EDS Classical and Hypermobility type; Bipolar Disorder; CFS; Migraines; Arthritis; possible OCD; TMJ; chronic headaches; chronic pain...the list goes on.
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Go see my blog!
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Smile; it confuses people.
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| Mon Jan 08, 2007 10:36 pm |
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kris0910
Spoonie in Training
Joined: Tue Jan 30, 2007 11:07 am
Posts: 1
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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..
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One by one the penguins still my sanity
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| Tue Jan 30, 2007 11:31 am |
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kmoncky
Plastic Spoon
Joined: Wed Mar 29, 2006 5:38 pm
Posts: 3314
Location: California, US
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Welcome, Kris! I'm glad that you find these links helpful. I hope your apt. goes well!
_________________
EDS type 3, Obstructive Sleep Apnea, Fibro, Hypothyroidism, Bipolar Disorder, IBS, tendonitis, bursitus, TMJ, OCD, MVP, POTS and some other stuff
"All doctors are guilty until proven innocent!"
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| Tue Jan 30, 2007 12:08 pm |
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MarylandxGirl
Baby Spoon
Joined: Tue Aug 22, 2006 3:14 pm
Posts: 472
Location: Westminster, MD
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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.
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Brittany Lynn 
I love you Justin R. Von Bussenius <3 10. 22. 07
Always & Forever. #50 <3
EDS types 1 & 3, CFS, POTS, IBS ,Wacky Blood Levels, Misbehaving tendons, partial scoliosis, Depression, Costochondritis, etc.
Rip VT <3
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| Tue Jan 30, 2007 12:15 pm |
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kmoncky
Plastic Spoon
Joined: Wed Mar 29, 2006 5:38 pm
Posts: 3314
Location: California, US
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bump
_________________
EDS type 3, Obstructive Sleep Apnea, Fibro, Hypothyroidism, Bipolar Disorder, IBS, tendonitis, bursitus, TMJ, OCD, MVP, POTS and some other stuff
"All doctors are guilty until proven innocent!"
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| Sat Aug 11, 2007 8:17 pm |
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ReineDeLaSeine14
Crystal Spoon
Joined: Thu Jan 11, 2007 9:25 pm
Posts: 9262
Location: Connecticut...part-time Texan...and French at heart :)
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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!
_________________
~Stephanie~
Unknown genetic disorder causing EDS, Dysautonomia, Asperger's Syndrome and other wacky things (ie. seizures, vision impairments, JRA)
Also have Bipolar I, Borderline Personality Disorder, EDNOS and some other stuff.
I am rarely here so if you wish to speak to me please use my email provided in my profile. Thanks 
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| Sun Aug 12, 2007 10:53 am |
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TheDysautonomiaGirl
Message Board Host
Joined: Sat Jan 07, 2006 5:18 pm
Posts: 6372
Location: Pennsylvania
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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
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Gwendolyn
~21~
POTS & NCS, Ehlers- Danlos Syndrome (Hypermobility & Classical), CFS, GERD, Fibromyalgia, Gastroparisis, Costochondritis, Pelvic Floor Spasms, Type II Diabetes, & Hypothyroid
"Be pushed by your dreams, not held back by your illness!" -Me
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| Sun Dec 09, 2007 1:07 am |
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kmoncky
Plastic Spoon
Joined: Wed Mar 29, 2006 5:38 pm
Posts: 3314
Location: California, US
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Cool! Thanks for all the imput guys... the more info the better!
_________________
EDS type 3, Obstructive Sleep Apnea, Fibro, Hypothyroidism, Bipolar Disorder, IBS, tendonitis, bursitus, TMJ, OCD, MVP, POTS and some other stuff
"All doctors are guilty until proven innocent!"
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| Fri Jan 04, 2008 3:37 am |
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