THANK YOU for your email. This is the first I've responded to because I've
been so overwhelmed.
My doctors are pushing me for a BMT, and a quick decision. I feel there is
a lot of stuff going against me on that 'treatment' (I've had lots of
transfusions, don't have a related donor, am a clotter, now am experiencing
bone marrow failure).
I also recognize that everyone has different degrees of PNH and that a lot
of people who have had help didn't have the disease as I do. It is hard to
take My variables and match it with Theirs.
Rabbit ATG nearly killed me 5 years ago, I was allergic. This is creating
problems for any treatment today.
My doctor is saying that a BMT is my only option, but I'm going to print out
your email and give it to him. I think I can do the Horse if he thinks he
can do it too. I feel pretty good about it, but am still leery of the BMT.
hi my name is melissa I'm 31 years old and i come from N.Ireland. I've been in partial remission from pnh for about 8 years. I first got it when I was 9 years...
Hello Melissa! THANK YOU for your email. This is the first I've responded to because I've been so overwhelmed. My doctors are pushing me for a BMT, and a...
Teresa Benson
teresabenson@...
Oct 17, 2006 5:19 pm
Hello- A BMT is a tough decision, but I had gone through with having mine done, because my brother was my donor that met all the markers. Here is my website...
Alison
alison@...
Oct 17, 2006 6:59 pm
Thank you, Alison. I was just looking at your website! Kindest Regards, T...
Teresa Benson
teresabenson@...
Oct 20, 2006 6:43 am
hi teresa i know how scared and alone you feel. I read a book called the power of positive thinking i really think it helped me stay positive on those days...
There is a lot of information and resources at the pnhdisease.org web site. My daughter had the ATG treatment (In ICU to be able to watch her closely for...
All the very best to you. If you have the BMT, share your experience with the group @ pnhdisease.org -- they are so very supportive and full of good...
Hi Teresa, Have you had a chance to see a PNH specialist yet? It is so important you be evaluated by doctor very experienced with many PNH patients. He'she can...
Hello Susan, I've been to Duke twice (I'm in CA). I was diagnosed in 2001. I've had upwards of six clots and went into anaphylaxis with Rabbit ATG. The ATG...
Teresa Benson
teresabenson@...
Oct 20, 2006 6:33 am
Teresa, Hi!! We met at Duke in 2003. That seems like a lifetime ago! When my counts started dropping I was put on cyclosporine as well. It did help increase...
Hi Sylvia, Wow, thanks for your words! I was on cyclo once before and hated it.... this was at much less dosage too. I'm really glad that you reminded me of ...
Teresa Benson
teresabenson@...
Oct 20, 2006 5:17 pm
Hi Teresa, It sounds like you have good medical doctors in place. With your history of clots, I understand the reasoning of considering a BMT, for sure. . The...
Hello Susan, I appreciate hearing from you folks on the website and know that your group knowledge is priceless. I'm sure there will come a time when I will...
Teresa Benson
teresabenson@...
Oct 22, 2006 5:10 pm
All the girls out there are totally lying when they tell you that size does not matter. Want proof? I am telling you this because it is the honest truth, look...
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