PNHdisease : Message: RE: [PNHdisease] hi

PNHdisease · To list is for people with Paroxysmal Nocturnal Hemoglobinuria (PNH), or friends and family members of those who have this rare

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Message #17206 of 17533 |

RE: [PNHdisease] hi

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 information. If you are not already a member, it's easy to sign up and you will find lots of loving (if electronic) arms around you.

-----Original Message-----
From: Teresa Benson
Sent: Oct 17, 2006 12:37 PM
To: PNHdisease@yahoogroups.com
Subject: RE: [PNHdisease] hi

Thank you, Linda.

T

Tue Oct 17, 2006 6:56 pm

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Linda <linda_childs@...>

linnea9

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Message #17206 of 17533 |

Expand Messages	Author	Sort by Date
Thank you, Linda. T...	Teresa Benson teresabenson@...	Oct 17, 2006 6:41 pm
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...	Linda linnea9	Oct 17, 2006 7:07 pm
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...	susan todd suztree	Oct 20, 2006 1:22 am
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...	Silvia Marchesin smarchesin2001	Oct 20, 2006 4:21 pm
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...	susan todd suztree	Oct 21, 2006 8:34 pm
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...	savanna-terk934@...	Apr 8, 2007 7:04 pm

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