Hi Susan,
It's Marc in Aurora. I just discovered this site as well. Normally I am on the PNH site with you but my AA has also become an issue of late so I want to check this site more often also.
I hope your counts rebound soon. Are you going to try any type of treatments for it?
My PNH is starting to be under control with the use of Soliris but the AA hasn't responded to anything yet. I've tried ATG (Horse) and Procrit & steroids. I am averaging a blood or platelet transfusion every 10-14 days. I may try a second round of ATG (rabbit) or Campath or Zenapax. My Hem is looking into those options. A BMT terrifies me so I don't want to try that option yet.
Still want to get together with the midwest contingent of PNH/AA folks for dinner. In the meantime there is a benefit happening at Walter Payton's Roundhouse this Nov. 2nd to raise money for PNH patients and research. Please check out the website
www.themrf.org for all the info. Please let me know if you can come, Alice and I would love to meet you.
Talk to soon,
Marc