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...
From: kirafae1986 writes: What is this CEDA? ************ CEDA is the Canadian Ehlers Danlos Association. http://health.groups.yahoo.com/group/ceda/ But is...
Thanks, I'v just put my membership in and it is pending :) ... Canadian anymore. We have members all over the world. It is a very large, active group....
Hello Everyone I recently joined this group and have been mostly lurking. My name is Sandi. I am a 43 y/o woman who was diagnosed with EDS type I according...
... Welcome, Sandi! No apologies necessary for the length of your post. Here are some resources on EDS. Hope they help get you started. EDS Today (USA) ...
Hi Sandi, As a woman with EDS and as a mom of a 13 year old boy, I think I understand how you feel and your confusion. I worry about you and your boy. Doctors...
frist sorry for the spelling. i am 23 and have a beatiful daughter. she is not showing any sings of have eds (thank god). it was heard growing up with no one...
Hi Sheena, I'm Cindy We have either type Classical or 3. The docs don't seem to agree. I don't have much pain, but my 18 year old son is having it really bad...
... I don't have much pain, but my 18 year old son is having it really bad for 4 years now. He is homebound. He hasn't gone to school in almost 4 years due...
From: smjbr04 To: ehlersdanlossupportclub@yahoogroups.com .... i was told at 12 then i got the difenate from gene tests when i was 20. when i was told that i...
From: Sheena Watlington how many mutates do you know of? **************** I'm sorry, I don't know what your asking. Can you ask it again? Cindy [Non-text...
Hello! I'm new here, my daughter (5) was just diagnosed a couple of days before Christmas with EDS suspected Hypermobility type. She's been having all kinds of...
like how i am the only one in my family. i am a classic type mutated. i have signs of the other types of eds. do you know of any one else like that. ... ...
amy, it is hard to say what is to high impact. my docters told me i could do things but no sports unless it was swimming and that is the best thing any way. as...
From: Sheena Watlington like how i am the only one in my family. i am a classic type mutated. i have signs of the other types of eds. do you know of any one...
Hi Amy, I am Sheenas mother,Valeri. Sheena is 23 now. I wish I had fought for her more with her teachers. They always told me she had learning problems. That...
Your welcome Sheena. Ask anything, anytime. :~) Don't worry about the miss spelled words or typing errors, we'll all get through it. The important thing is...
I have been diagnosed with eds but have yet to find out what type. I have done alot of research and am pretty scared of what the final out come is going to be,...
Anne, have they done further tests to help diagnose which type? My doc ran some on me just to rule out some of the symptoms. Mine is pretty much the...
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