Ron, Sorry for not getting back sooner but we had puter trouble. Any way Thanks Things are going really good. Matt had really bad side effects from the...
hi-my name is courtney kennedy, I was diagnosed with evan's on July 13th 2001. Some people in the group may remember me, I used to be a lot better about...
Hi Sharon Sorry to hear about Matt's reaction to the drugs. As you know I'm not expert on this subject at all but I do know about Amitriptaline! I have chronic...
Hi... My name is Kathy and I have a son (Donavan-) who is now 11 who began having bruising symptoms at the age of 2 or 3 and was diagnosed with ITP at 5 years...
Courtney, Your letter brought tears to my eyes. God bless you for fighting your fight and living your dreams. I pray that your time in Ireland will be...
lnalou@...
Jan 4, 2003 8:42 pm
1979
Kathy, I don't have any experience with ALPS but do know that when they first diagnosed my son with Evan's they also tested for ALPS, he didn't have it. At...
Just catching up on my reading, I read this website with much curiousity and interest. I have been seeing the top neurologists here in South Bend, IN , and...
Just catching up on my reading, I read this website with much curiousity and interest. I have been seeing the top neurologists here in South Bend, IN , and...
Sharon, I am so sorry Matt has had such a terrible time with vincristine. Nick did so well with it. Just another reminder nothing works the same for any of our...
Marlene Pritchard
opca@...
Jan 5, 2003 4:43 pm
1983
Hi there, You raise some good questions. I wish there was someone we could turn to who would have the answers for us, but at the moment, I'm not sure anyone...
lnalou@...
Jan 5, 2003 5:18 pm
1984
hi! i haven't posted in a while but i have been reading what everyone else is going through. last thursday, my fiance Mike went out of remission after being...
In a message dated 1/5/03 5:21:27 PM Eastern Standard Time, ... This is true, that someone with a compromised immune system should not be around anyone who has...
lnalou@...
Jan 6, 2003 12:46 am
1986
Lou thank you very much for all the information. i am not sure what type of vaccine the baby had but i remember the nurse saying the day that the baby was...
lou also, i had a viral infection (like the cold stuff with a cough and sore throat) that started on christmas eve and i just got completely over it a few days...
I hope everyone is doing good. I have applied for SSI for my 4yr. old whom has Evans. He is in reemission right now and has been since '2000. My question is...
rcavazos161251@...
Jan 6, 2003 2:38 pm
1989
In a message dated 1/6/03 7:34:22 AM Eastern Standard Time, ... Hi there, Usually, when they want to give a shot right after birth, it is the Hep B vaccine. I...
lnalou@...
Jan 6, 2003 4:15 pm
1990
In a message dated 1/6/03 8:08:55 AM Eastern Standard Time, ... Any cold or virus can be a trigger. It could be that although he did not seem to get a bad...
lnalou@...
Jan 6, 2003 4:26 pm
1991
Thank you Courtney for that wonderful message. I also often think that the illness has made my son stronger because of the fight he has been through. He is...
Roger Dietrich
roger.dietrich@...
Jan 6, 2003 4:41 pm
1992
I'm sorry to hear about your fiance's relapse that isn't fun! In response though to your question, I don't believe so myself. Not sure if there is research...
i have done a lot of research on autoimmune disorders and those individuals having a large amounts of heavy metals in their bodies that could have possibly...
check out this website! it is GREAT!! talks about alternative therapies for autoimmune disorders (especially ITP) www.itppeople.com ... Do you Yahoo!? ...
TO Whom It May Concern: May I ask to be removed from this Evans Syndrome mailing list? I have been grateful to be included. The child I was following passed...
Hoeffel Gwendolyn
ghoeffel@...
Jan 7, 2003 4:13 am
1997
Lou just reading my back-logged e-mail. If you still have that article on Antiphospholipid syndrome from the AARDA I would appreciate a copy. thanks, ...
Hi Sharon, I just tried to send the article to you to your private email address, and it was returned as undeliverable. The address I sent it to was <A...
lnalou@...
Jan 8, 2003 5:42 pm
1999
Hi everyone, I have written about vaccines on this list before and thought you may be interested in reading this article. I want you all to be aware that if...
lnalou@...
Jan 9, 2003 3:03 pm
2000
Thanks Lou for sending the article. My husband is in the military and works at the Pentagon, so this has really been on my mind. He is exempt from getting...
Hi Heather, Thank you for sharing your information. I would definitely be interested in anything else you come across. I was just interviewed this morning...
lnalou@...
Jan 9, 2003 7:37 pm
2002
Just wanted to know if anyone had info on this rare disease that involves chronic muscle inflamation and if it associated with Evans....thanks for any help...
Hi there, I just did a quick search and these are the things I came up with... <A HREF="http://www.myositis.org/index2.html">Click here: The Myositis...
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