Hi Shelby!
My 14 yr old son, Mac, has PNH, is on Soliris and is a patient of Dr. Margolis. We live in a suburb of Milwaukee and are fortunate to have Dr M so close. Mac was dx in 2009. Altho neither of his sisters are a match, he has several excellent non related donor matches available. As a txp specialist, Dr M has recommended Soliris over txp at this point due to high risk and long term side effects of txp. We also took our son to see Dr Maciejewske in Cleveland who stated that with txp, a patient often trades one disease for another (GVHD). Mac's soliris infusion are done at home. Couldn't be more convenient!
I would love to talk with you abt our boys and their treatment choices. Pls let me know if you would like to exchange phone # or e-mails. Thnx, Amy
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