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Messages 5062 - 5091 of 5091   Oldest  |  < Older  |  Newer >  |  Newest
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5062
Hello there, My 8 year old son named Conner has had Evans for 4 1/2 years now. He actually has had very little treatment compared to others with the disease....
amanda sommers
mnd_sommers
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Apr 3, 2008
6:27 am
5063
Debbie: Thanks for your response... Excuse any typos-I have been working a lot the past few days and it's catching up with me... My son, Patrick, is currently...
Erin Healey
eheals27
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Apr 4, 2008
3:58 am
5064
Julie, Paul did not have nay side effects from the cellecept, but did have his blood work checked on a monthly basis. Betty **************Planning your summer...
bettanmic@...
bettanmic
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Apr 4, 2008
1:30 pm
5065
Julie, Ben (17) has been on cellcept with no side effects for the better part of 6 years. He is fine on it. Hope this helps, bettanmic@... wrote:...
Shari Miller
sharim61
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Apr 4, 2008
3:03 pm
5066
Hi Erin, I'm glad to hear Patrick's hematologist is monitoring him every two weeks. That's very smart. My main problem has always been the AIHA, but my...
Debra Adamo
sdkkadamo
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Apr 4, 2008
3:22 pm
5067
Hi Debbie! Patrick is 15, he has been seeing the hematologist every 2 weeks since last March due the prednisone being lowered very slowly. Patrick seems to be...
Erin Healey
eheals27
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Apr 5, 2008
4:12 am
5068
Hi, Ern, My son, Nick was 16 when his auto immune adventure began. It's quite a heavy load for an active teenager - they want to be "normal" and know they...
Marlene Pritchard
opca@...
Send Email
Apr 5, 2008
12:29 pm
5069
Hi Erin, Wow...it sure sounds like you have your hands full at work! Hopefully working for a cardiologist gives you a foot in the door for some good doctors! ...
Debra Adamo
sdkkadamo
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Apr 5, 2008
6:50 pm
5070
Hi, everyone! This is the first time that I will post a message here. I guess I am desperately looking for answers. And any suggestions you can offer will be ...
nigel040102
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Apr 12, 2008
5:17 am
5071
... will be ... flares." This ... had Evans ... here's ... running ... and hgb ... concern we ... the brain ... trying to ... am now ... and I had ... body ......
jakk5858
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Apr 12, 2008
11:44 am
5072
Hi, Julie! Thanks for the reply. I have tried Cellcept before, but it didn't really work on me. The IVIG has always been helpful to me. I routinely have IVIG...
nigel040102
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Apr 12, 2008
12:01 pm
5073
... IVIG has ... weeks. ... the other ... hemorrhage. All ... plays ... Yes, this ... <EvansSyndrome%40yahoogroups.com>, ... I was ... flawless as we ... of...
jakk5858
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Apr 12, 2008
12:48 pm
5074
Hi again, Julie! Yes, I have had my spleen removed years ago. My counts raised after the surgery, but only lasted around 2 weeks, and had a lot of...
nigel040102
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Apr 12, 2008
3:58 pm
5075
Hi Niguel, I'm so sorry to hear about your current struggle! It sounds like the doctors are trying numerous different options. Have you ever undergone...
Debra Adamo
sdkkadamo
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Apr 12, 2008
6:31 pm
5076
Hi, Debbie! Thanks. Yes, we are trying to find something that will really work. I have done Rituxan (Rituximab) a few years back. I first had 4 infusions...
nigel040102
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Apr 12, 2008
9:03 pm
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...
bettanmic@...
bettanmic
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Apr 14, 2008
1:41 pm
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...
nigel040102
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Apr 14, 2008
2:30 pm
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...
Debra Adamo
sdkkadamo
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Apr 14, 2008
3:45 pm
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 ...
nigel040102
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Apr 14, 2008
4:01 pm
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...
homesbybev@...
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Apr 14, 2008
4:56 pm
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...
danny.hutama
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May 5, 2008
5:51 pm
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...
bettanmic@...
bettanmic
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May 5, 2008
6:54 pm
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...
Marc Passola
mpassola
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May 8, 2008
8:43 am
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...
Debra Adamo
sdkkadamo
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May 9, 2008
5:56 am
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...
ian walton
eastcote_man
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May 10, 2008
7:16 am
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...
stillermom
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May 10, 2008
2:03 pm
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...
stillermom
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May 10, 2008
2:17 pm
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...
precious_catfish
precious_cat...
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May 10, 2008
4:27 pm
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...
kim
krobinstein
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May 10, 2008
7:18 pm
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...
Tom Goodman
tlg6805
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12:55 pm
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