http://health.groups.yahoo.com/group/EvansSyndrome/ The Evans Syndrome mailing list is for the purpose of sharing information and support to those individuals who have or know som Sun, 11 May 2008 12:55:06 GMT Tom Goodman http://health.groups.yahoo.com/group/EvansSyndrome/message/5091 http://health.groups.yahoo.com/group/EvansSyndrome/message/5091 Hi All, I watch this group and pray for all of the members as we deal with the problems of Evans Syndrome on a daily basis. I have lived with Evans Syndrome my Sat, 10 May 2008 19:18:40 GMT kim http://health.groups.yahoo.com/group/EvansSyndrome/message/5090 http://health.groups.yahoo.com/group/EvansSyndrome/message/5090 Yes I do agree these children are so special but alas I must also state that when they go home to heaven it's a special grief one that so hard to fathom so Sat, 10 May 2008 16:27:22 GMT precious_catfish http://health.groups.yahoo.com/group/EvansSyndrome/message/5089 http://health.groups.yahoo.com/group/EvansSyndrome/message/5089 Hi, I have a son with Evans Syndrome. He is 26 now, the drs that i took him too advised me against that surgery. But what do you do , its all such a guessing Sat, 10 May 2008 14:17:11 GMT stillermom http://health.groups.yahoo.com/group/EvansSyndrome/message/5088 http://health.groups.yahoo.com/group/EvansSyndrome/message/5088 Hi, I pray everyone is healthy and in remission.... and I pray everyone's treatment works for them. My son (Nick-26) had the spleen removed last year. As Sat, 10 May 2008 14:03:58 GMT stillermom http://health.groups.yahoo.com/group/EvansSyndrome/message/5087 http://health.groups.yahoo.com/group/EvansSyndrome/message/5087 date Tue, Apr 29, 2008 at 5:25 PM subject Re: Rare disease mailed-by specter.senate.gov hide details Apr 29 (10 days ago) Reply Dear Mrs. Cipa: Thank you for Sat, 10 May 2008 07:16:49 GMT ian walton http://health.groups.yahoo.com/group/EvansSyndrome/message/5086 http://health.groups.yahoo.com/group/EvansSyndrome/message/5086 Hi All My wife went in for a spleenectomy yesterday morning, we saw our consultants on 28/4/08 they wanted her to go in on friday 2nd of May but as we had Fri, 09 May 2008 05:56:35 GMT Debra Adamo http://health.groups.yahoo.com/group/EvansSyndrome/message/5085 http://health.groups.yahoo.com/group/EvansSyndrome/message/5085 Hi Danny, I'm sorry to hear about Tiffany's stuggles with this darn illness! Especially since she is so young! Like everything else with this illness, what Thu, 08 May 2008 08:43:37 GMT Marc Passola http://health.groups.yahoo.com/group/EvansSyndrome/message/5084 http://health.groups.yahoo.com/group/EvansSyndrome/message/5084 Hi Danny, two of my brothers had a spleenectomy, the first one when he was 20 years old, and gave excellent results, he had no more problems after that Mon, 05 May 2008 18:54:32 GMT bettanmic@... http://health.groups.yahoo.com/group/EvansSyndrome/message/5083 http://health.groups.yahoo.com/group/EvansSyndrome/message/5083 DANNY, I THINK EVERYONE WILL RESPOND WITH A DIFFFERENT ANSWER TO THIS ONE, SOME HAVE HAD LUCK WITH THE SPLEENCTOMY , OTHERS HAVE SHORT TIME, SOMETIMES PEOPLE Mon, 05 May 2008 17:51:29 GMT danny.hutama http://health.groups.yahoo.com/group/EvansSyndrome/message/5082 http://health.groups.yahoo.com/group/EvansSyndrome/message/5082 Hi, my daughter, Tiffany, is almost 3 and she has been diagnosed with Evans since she was 10 months old. Our doctor has tried steroids, Rituximab, IVIG, and Mon, 14 Apr 2008 16:56:55 GMT homesbybev@... http://health.groups.yahoo.com/group/EvansSyndrome/message/5081 http://health.groups.yahoo.com/group/EvansSyndrome/message/5081 Hi! My name is Bev. I'm 54 and I'm in a flare up now. It was hard to get my counts up this time. My hemo went to 7.4 I've had 2 trasfusions in the last 2 Mon, 14 Apr 2008 16:01:06 GMT nigel040102 http://health.groups.yahoo.com/group/EvansSyndrome/message/5080 http://health.groups.yahoo.com/group/EvansSyndrome/message/5080 Hi, Debbie! Thanks for the info. Perhaps I will try retrieving the e-mails sent in the group years ago about the Hemopure. My physicians have never tried it Mon, 14 Apr 2008 15:45:08 GMT Debra Adamo http://health.groups.yahoo.com/group/EvansSyndrome/message/5079 http://health.groups.yahoo.com/group/EvansSyndrome/message/5079 Hi Niguel, Betty has a great memory! Yes, the female (I believe her name is Emily), was given Hemopure. It was approved on a "compassionate use" program Mon, 14 Apr 2008 14:30:44 GMT nigel040102 http://health.groups.yahoo.com/group/EvansSyndrome/message/5078 http://health.groups.yahoo.com/group/EvansSyndrome/message/5078 Hi, Betty! Thanks for the reply. I would very much be interested on any information anyone can give me about using substitute blood. One of my oncologists Mon, 14 Apr 2008 13:41:19 GMT bettanmic@... http://health.groups.yahoo.com/group/EvansSyndrome/message/5077 http://health.groups.yahoo.com/group/EvansSyndrome/message/5077 Dear Niguel, Sorry to hear of your current severe flare up, my son, Paul who turned 21 last week, had some very low counts in past years and he tried all of