My son (15 - Evans since age 4, but now classified as ALPS) has had several PET scans. (Also one lymph node biopsy that was negative.) You are correct,...
I think I am supposed to respond to this message to make sure I am still a member of the Evans Syndrome group. I would still like to be included. Thank you....
I too would still like to be included in the group, I look to stay up to date with others this way, hope that it still happens Betty Mom to Paul 20 Evans+ ...
I also would like to stay abreast of the groups updates. Hope all is well with everyone, Thomas ... From: bettanmic@... To: EvansSyndrome@yahoogroups.com ...
I'm glad to see people posting to the list again. I have been meaning to send an update on my son for some time now, but never seemed to get to it. When I last...
Unfortunately, my dealings with NIH were not as positive... they have NO study available for Evans Syndrome. At separate times, my son had no recordable...
Susan, I am so glad to hear everything came out okay with the Lymph nodes. What a relief for all of you. Since Aidan already was transplanted and hopefully no...
Dear Lou, I hope you are doing well. Micah is currently enrolled in an NIH study. His new doctors in PA are also considering a diagnosis of ALPS. Unphased,...
I too would still like to be included in this group!It is comforting and educational.My daughter is nine and has had this for two years now.She still does well...
I'm glad to be back in the loop. Nick was in crisis in 2001-2002 (Evans and other auto immune issues - including Lupus) and he's doing very well. During that...
Marlene Pritchard
opca@...
Mar 9, 2008 8:08 pm
5024
I understand your frustration. I had contacted the NIH about my son in 2000, 2002 and 2004 in the hopes of getting him him evaluated for ALPS - no luck I had...
Hi Amy, That is wonderful that Aiden's transplant was successful. I have heard the same thing at ITP conferences - most Evan's cases are something else. An...
Hello, We're new to the group. Our heads are reeling after 6 weeks of blood draws, doctors visits, x-rays and a bone marrow biopsy. Our beautiful, vibrant...
... blood ... us ... autism.) ... 100.5-- ... have ... enlarged ... heard ... (She ... to ... been ... information, ... that ... has ... light ... was ... ...
Denise and Scott, I am so sorry that your daughter has been diagnosed with Evans syndrome. My son Aidan was diagnosed with autoimmune hemolytic anemia at 10...
Susan & Group, My son now 20 , was diagnosed with Evans at 12. We have had many ups and downs over the years and last year were told he had cancer and then...
Dear All, Betty is right - this auto immune ride is a roller coaster! But, thankfully Amy is correct too! There is so much more information and progress for...
Marlene M Pritchard
opca@...
Mar 11, 2008 2:55 pm
5033
Hi Marlene, Thank you so much for sharing Nick's accompolishments with us. I don't post very often these days but I monitor the messages and pray for the...
Hello, I need to know if anyone has anyone has any thoughts on Bone marrow transplants and Evans? I am just a mom trying to understand this whole process I...
Julie, our son, Ben (17) was diagnosed when he was 10. we are lucky that his case is fairly mild and has lived a pretty normal life not withstanding drugs and...
Julie, My son, Aidan, had a bone marrow transplant this past summer. Aidan's disease was a little more complicated than just evans syndrome, basically his...
Hello, I recently found this wonderful discussion group by searching for medical information that might relate to my own circumstances. I've not been diagnosed...
How old are you? I am 54 and was diagnosied with evan & ITP 4 years ago. I am going through it right now as I write. This last one was pretty rough. 2...
homesbybev@...
Mar 24, 2008 4:35 pm
5041
Hi Bev. Thank you so much for writing. Yes, your experience sounds very scary to me. Hopefully the blood transfusions and medication will get you through it...
God Bless you! Remember "By his stripes we were healed." I am amazed at the children that have evans and ITP. I wish everyone healing! Bev Burton Broker...
