hi my name is Shelby, i am a teen, i was diagnosed with ehlers disease a few years ago. i am very interested in hearing the different information and research...
hi this is shelby the new member to ur group and i just want to let u know that i am very upset w/ ur support group. i am a teen seeking help advice anything...
hello/ my name is Olga. i am living in belarus. i am 19 years old. i have symptoms that can be ehlers-danlos type 6. i am really looking for good friends and...
Kitten
OK.77@...
Aug 6, 2005 12:38 pm
346
Hi Shelby and Kitten, Welcome, I'm happy you made contact with the Ehler-Danlos group. However, I don't think there is much activity in the Yahoo group that...
Shelby, I am sorry no one welcomed you to the group. Please remember that everyone here is dealing with their own health issues and not everyone has time to...
http://www.personalizedmedicinecoalition.org/emedia/email/invite_090705.htm New discoveries in the Genome Era are changing the face of science, medicine and...
Dear Friends: In March, Congresswoman Judy Biggert (R-Ill.) introduced a bill that would protect you and your family from genetic discrimination in health...
Hello! Get a quick glance of Healthcare News and Resources here http://www.allinonedirectory.info/HealthUpdate/ Take care, Kate ... Start your day with Yahoo!...
Note: forwarded message attached. __________________________________________________ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection...
Hi, I am trying to find out all the info I can about this syndrome. My daugther is 9 and was just diagnosed a week ago with EDS Hypermobility. They feel she...
Note: forwarded message attached. __________________________________________________ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection...
Hi, Katherine, I've just been diagnosed, too. I've been searching the web for information. Being a "rare" disease, the information is somewhat limited, but...
The Ehlers-Danlos National Foundation has created a brand new glossy publication called the Medical Reference Guide. The goal is to distribute this brochure to...
I'm new here. I'm 21 I have EDS (skin condition) looking for others like me I guess. I currently live in Virginia but I call Florida home. I'm the last member...
Hi Everyone, The latest issue of EDS Today is going to the printer today. Lead Article: Clinical Report: Tenascin-X Deficiency in Autosomal Recessive ...
So I know you all have your own tricks to help survive the damage done to our skin by bandaids and other adhesives. I was always lucky, by the time the...
Hello I am new to this group. I have type 3 hyper extensive ehlers danlos. I also have chiari malformation. I'm curious if anyone else has had this double up...
... There are people on the CEDA list that have both of these syndromes. I have heard that they are studying a possible connection. If you would like, I will...
... else ... caused. ... ******************** Hi, My son has EDS and Chiari. He is 18. The National Institute of Health and The Chiairi Institute in NY are...
A reminder. A program about a young teen girl with the two conditions will play Nov.13 at 6PM, Nov 15 at 5AM, Nov 19 at 9PM, Nov 20 At 4 PM, and Nov 21 at...
I have quite a complex case and am curious is I should look into POTS...everntually....I also have syringoymelia form c2-t10 and has now perforated my spinal...
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