Has anyone's doctor mentioned Promacta to them? It is a new oral drug out for chronic ITP. It was approved by the FDA last week and should be available this...
Hi all! I am a Mom of a little boy (Zachary age 5) whom was recently diagnosed with Evans...4 months ago to be exact. Since then our lives have been literally...
Hi Nicole.... Sorry to hear your son has been ill...Drs will do everything they can to get your son feeling better... You will hear from many people on this...
Hi Nicole,  I am so sorry that Zachary is ill. It is heartbreaking as a mom to see your child subjected to endless blood draws and treatments. Over the...
Hi Nicole, I'm glad you found this group - we all know what you are going through. My 16 year old son has autoimmune neutropenia and ITP. He is also Coombs...
Nicole, I am so sorry to hear that your son was diagnosed. I know how devistating the news is. My daughter was diagnosed right before her 5th birthday. She is...
Nicole, We here truly understand what you are going thru some days and years are really tough and then others can be better, it is important to find a doctor...
Wow, Thank you everyone for your reply's...it is comforting to know there are people out there that understand, and have been through it all. We will...
Hey Susan, My son has much of the same ailments...when he was 3 they removed a swollen lymph node from his neck and in the years following his other glands...
Hi Nicole, My son was diagnosed with evans when he was just one-year-old. He has had issues with all three cell lines. We also questioned whether it could...
Hi Nicole, My daughter was diagnosed at age eight,she is now 10.She has neutropenia,thrombocytopenia and is Coombs positive for antibodies against her red...
Hi, everyone. I just wanted to drop a note into the group to let you know I just joined. I am already a member of Evans_Syndrome@yahoogroups.com. Also, I am...
I've been reading all of the stories of people with evans syndrome. I'm also very scared. My daughter has a platelet count of 97,000 now. Life seems sooo ...
... Well, I spoke too soon. Hannah's recent platelet count was 16,000. So, we are back on the steroids 60mg and praying that she gets better numbers. I'm so...
I have been reading the posts lately and I have'nt posted anything for a while. Sorry to hear about Hannah, we too had to cancel a Dream come true vacation to...
... Hello Nancy, My son Aaron is also 19,he is going through low globulin count now even though we were told that monthly dose of ivig should help. Other ...
Hi Nancy, Has Rachel been seen by an Immunologist? If not, I would recommend her getting the opinion of an immunologist who specializes in the immune...
Hi Amy, Thanks for your response and insight. Today Rachel had a hematology appointment to check her levels. They were not very good, WBC was 2.0, ANC ...
Hi Nancy, My son is on Neupogen - without it his ANC was usually around 200. His biggest problem was pseudomonas skin infections and sinus infections....
I'd be really interested in knowing what you find out about your son's lung nodules. As I have written before, my son has the same thing. They tend to wax and...
Dear Group, Just wanted to extend my prayers to all for the Holidays. Paul has had a very good year as far as his Evans , only one IVIG treatment. As some...
Thank you Betty. I too would like to thank the group for the support system that everyone provides. Katie has also been healthy, but like you, I am aware...
Merry Christmas, Happy Holidays.... two years ago today, my son Nick (age 26 now) had a Hgb count of 4.5 and had around 35 units of blood and chemo and...
Hi my name ia Haskill Edwards ,I was told I had Evans Syndrome over four years ago,I was on prednisone 80 mg for almost a year I was given Rituxan 8 treatment...
To everyone in the group, you are such an insipration to me. I wish all of you the best health and peace for the new year. As the mom of hannah 16, each day...
Susan. My daughter Madison is 8 and had Rituxan in 2006. SHe however did not have any luck with it. We did all 4 rounds but never really saw an increase. We...
Hi Julie, We have three children. My oldest had evans.  We banked our youngest children's cord blood. My second child,Nolan, was banked with Cord...
Hi Amy, So then for your son Aidan could you tell me how they determine when to use this cord blood? Also the article I read said people donate as well for...
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