Hello all~ I wanted to let you all know that I am still around :) I haven't had much access to the internet in quite a while, but when I'm able I read all of...
Dear everyone in this group, My name is Maxine. I am Nigel's sister. He was the one who started this thread. I was following your group for quite some time...
DEAR MAXINE, I AM SORRY TO HEAR OF YOUR BROTHERS PASSING AND HOPE THAT YOU CAN FIND PEACE IN THE DAYS AHEAD. BETTY **************Vote for your city's best...
 Hi All. I was wondering if any of you have problems with pneumonia. My 16 yr. old son Nik has had pneumonia almost non-stop since February. His blood counts...
Hi Laurie, My son, Aidan, was diagnosed with evans syndrome when he was 10 months old. He also battled many other problems including chronic repiratory...
... months old. He also battled many other problems including chronic repiratory infections (often pnuemonia) for years. He was diagnosed with a primary...
Hi, My daughter Madison also has allergy issues. She was in a short term remission(8 months)Â but got Pneumonia the begining of January and relapsed. SHe takes...
When my son was 9 months old, we had to get tubes put in his ears as he had so many ear and sinus infections, and also croup. He coughed and sneezed so much...
Hi. I will be taking my son to an immunologist on Tuesday. This part of my sons illness is new to me. What are some questions I should be asking? I have been...
Hi all, The group has been quiet lately. I hope everyone is doing well. Aidan is doing really well. His bone marrow transplant was over one year ago, it...
interesting...thank you for sharing Erin Amy Walsh <smlybly@...> wrote: Hi all, The group has been quiet lately. I hope everyone is doing well. Aidan...
Hi Amy. I would have loved to have been there. I really need to educate myself more on this topic. There is so much to learn. I just want to be able to...
Thanks Amy, I find this very interesting. I'm glad to hear that Aidan is doing well after his BMT. I am a Evans's patient and have not been to a immunologist...
thanks for the information, yes the group does seem quiet lately, Paul is now 21, he was 12 when we first joined, he is doing well from with his Evans, he has...
Hi Amy, Thank you for sharing.That is very helpful!Rebekah has been doing well since February...we are hoping it stays that way, once cold season hits:)I am...
I was curious what others thought about immunization and banking cord blood. I am pregnant and due in April and I think I should hold off on immunizations for...
Lisa, Congratulations on your pregnancy! Aidan is the oldest of my three children. We paid $1200 to have our second child's cord blood banked with a private...
i am glad everyone is doing relatively well. ben, now a seior in high school, is doing very well. he is on the max adult dose of cellcept and that is...
Hello, could anyone tell me if they have had any lung issues related to evans my son is going through testing in regards to nodules found on ct scan we will be...
Julie, My son Paul has had some minor lung infections with Evans usually cleared up with fairly easily with antibiotics, however I did see an article today ...
In a message dated 9/5/2008 9:36:11 A.M. Eastern Daylight Time, jakk5858@... writes: Hello, could anyone tell me if they have had any lung issues related...
Hi Amy, Thanks for the update. It is wonderful to hear how well Aidan is doing. Who was the doctor that spoke? I definitely need to look into meetings here in...
Susan,  Thanks for sharing the information about the NIH study! How exciting! I hope more evans patients will get involved. I know we had an excellent...
hi folks I have been quiet for a long time but still read all the emails with interest. Nathan is now 13 and he's turning into a young man. We stay in...
Paul,  I am so sorry about Nathan's relapse. It makes me sick to think how quickly one can go from healthy to sick with this awful disease. Katie really...
Hi Paul, My name is Lisa and my daughter Madsion is 8 years old and was diagnosed with Evan's Syndrome a little over 3 years ago. She has had many ups and down...
... stay in Scotland, ... 2001. He's ... and today ... fridge lock ... ago ... swimming his ... and he ... emails about ... the ... Hello Paul, I totally...
Paul, Just to give you another perspective, my son usually does better in the summer even though he is swimming in public pools and freshwater lakes. I don't ...
Paul, I am sorry for your son's relapse.When my daughter came down w/ this 2 years ago at age 7...we had been swimming in a public pool once a week.We have not...
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