Hello everyone. I am a 28-year-old female who has had Evans Syndrome since 2000 - when it started with a very low hemoglobin count of 2. Since then I had...
I'm so happy to hear he received his wish - he must have been so happy. I wish I could hear him play! Lou Lou Addington, RN, LNC Above the Notch Medical...
Hi Amy, Sorry to hear about the swelling and weight gain. It is not something that I have encountered except with the use of prednisone which it clearly does...
Hi all, I've been a member of this group for forever, however, I've not really posted with questions, only my story. In a nutshell, I was diagnosed with Evans...
Hi all, I've been a member of this group for forever, however, I've not really posted with questions, only my story. In a nutshell, I was diagnosed with Evans...
In a message dated 3/2/2007 3:50:11 P.M. Eastern Standard Time, usmlaura@... writes: What course of action have those of you that have been in remission...
Lou, Thank you for responding. I am not currently on IVIG, which is good because I can't even imagine what would happen then - last year on IVIG I simply...
Hi, My family was a Make-A-Wish we went to hersey pa. our daughter was granted this cause of evans and ITP. Now I am trying to pay back ,, I am helping a...
Greetings, Just wondering if anyone in the Group has gone through Shingles. I'm currently suffering from them at this time. Any info would be appreciated....
Thomas... My son, Patrick, is the reason I am on this board-he has hemolytic anemia and is also being watched for Evans... He has not had shingles but I had...
Hi Thomas, I'm sorry to hear you're suffering from shingles. I had them a few years ago and they sure hurt! Mine started out with pain on my right side. A...
Is there any information on Rituxan for ITP. I found that it is in study in Boston Children's - no response from them on results. My grandson's doctor who is...
judydre2@...
Mar 8, 2007 9:13 pm
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Hi everyone, My son (Tim, 15 - Evans since age 4, now considered "ALPS") just started to take Cellcept this week for the first time... trying to raise his...
I've been taking Cellcept for the past 3½ years with prednisone. I've had no bad side effects. I quit worrying about whether or not I've eaten or not. I take...
Kate, My son, Paul, 19, has been taking Cellcept for two years now with the best results of everything to date, no reactions and he takes it before bed which...
My son was part of that study of rixutin in Boston. Sorry to say it wasn't of help to him but has helped others. Right now he is just taking cellecept, but...
Thank you BettyMom....cellecept is a new lead. We have heard from Pam Boardman of Boston and will work with parents to take my grandson to Boston for a second...
judydre2@...
Mar 9, 2007 6:18 pm
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Has anyone heard of a child with Evans, slowly, over the course of time,go into remission?I am wondering what is going on with my daughter? My 8 year old,for...
Jennifer, Please consider e-mailing Dr. Bleesing at Cincinnati Children's Hospital. jack.bleesing@... Even if you decide not to travel to Cincinnati for...
Jennifer, Thanks for the update. I was wondering how your dr visit went. Yes, our children sound very similar. My son has had several periods of remission over...
Yes, it is true that your child can go into remission on her own. This is how our doctor explains it: you go to sleep one night and wake up with Evan's. Well,...
Lisa, Thank you for sharing your story with me.It was very helpful! It is interesting that your daughter has the same issue with the RBC's.I wonder then, if it...
Amy, Thank you,I will definitely do that!That is very helpful! Yes,I am concerned with her low ANC and NK cells.The hematologist told me that her ANC is low...
Hello all.... I am a new member looking for some information. My nine year old daughter was diagnosed with autoimmune hemolytic anemia three years ago. In the...
... Apparently anyone can have cold or warm auto-antibodies, and cell destruction can be triggered by body temperature. Caitlin has both warm and cold...
Hi Glad to have found this site. We live in Mexico and when my 17 old daughter was diagnosed with Evans, like any other parent you search and search. Her...
I will be in Long Beach,California in April and would like to speak to a person qho has Evans. How has it effected their lives? What treatment is good? and...
... Insurance issues we have now with my son... We have to pay COBRA, (I may need a second job) ....because he has a little bit saved in an IRA, but too much...
