Everyone, please welcome our new member, grandmalois1. Lois, I hope you'll introduce yourself! Our group is a close-knit bunch of people who are very...
Dear Margaret, Would you please send this to the PNH group? Dear PNH families, Thank you so much for all of the cards and expressions of sympathy you have sent...
Hello everyone, My Name is Lois and I joined this site because my daughter was diagnosed with PNH and I really do not know anything about the disease. I have...
Hello Lois. My name is Heather. I am 24 years old and I was diagnosed in 1997 but I had PNH for a few years before that. My doctor thinks I have had it...
Hi Lois, I'm glad you're here. I don't post often, but read and learn a lot here. I felt compelled to respond to your mssg, because I worry about people ...
Hi Lois-- Well, I've had PNH for 42 years now, so that 10 year prognosis was a little off for me! Actually, that's an old figure that I'm not sure I really...
Thanks Melissa. Its pretty awesome considering she only weighed 1lb 10 oz 2 years ago and now she is a little porker!!!!No problems either. Now we just have...
Dear Lois, I'm sure that the articles that you found about PNH are outdated - long before the research, knowledge, medical approaches in treatment. An ...
Hello, This email message is a notification to let you know that a file has been uploaded to the Files area of the PNHdisease group. File : /journal...
PNHdisease@yahoogroup...
Feb 6, 2004 1:41 pm
16555
... I understand this is a life threatning disease and that the prognosis is 10 years. I do not know if I believe in that prognosis. s, I am sorry I did not...
Welcome Lois!! My name is Melissa and I am the editor of the PNH Group Newsletter. It comes out 4 times per year and is funded by the generous gifts of the...
Hi Lois; I was diagnosed with PNH in 1997 but also was told my PNH has probably been with me for many years previous to the diagnosis. I do not need...
Hi everyone- I hope this post finds everyone doing well. I wanted to try and post on the other site, but it did't work. I'm not sure where things were when I...
Marianne, thanks for the update. I've been thinking of Tara. If you need anything, or Tara wants to talk about the bmt or Rhodes 7, please let me know. With...
Hi Marianne-- I'm glad to hear Tara is doing well after her surgery, though sorry to hear that she's having such severe PNH problems. March 1 is very ...
Hello All; I think it would be a nice if everyone could send a card of well wishes to Tara. She's been through so much with her recent Lung Surgery and with...
Hi Lois. Like everyone here has said, the information out there can be overwhelming! I was diagnosed 9 years ago and I'm still going strong as well. I've ...
In a message dated 2/9/2004 8:48:17 PM Eastern Standard Time, JeanneGon@... writes: Marianne, thanks for the update. I've been thinking of Tara. If you...
In a message dated 2/10/2004 9:11:28 AM Eastern Standard Time, mnorton@... writes: I'm glad to hear Tara is doing well after her surgery, though sorry to...
Thankyou Marianne for keeping us informed. I got my new marrow on March 4th a year ago. So on my 1st anniversary IŽll be thinking of Tara whoŽll be almost...
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