I have one contact in Florida with LGL and PRCA. My contact is on email, but I found him through another forum. I don't know if they are on Facebook, but I will let them know. The man goes to Dr. List at Moffitt. Many on this these boards are familiar with him.
I will join your group. I actually don't think the main issue is LGL, but the immune system deficits caused by various viruses and environmental factors.
Dallas, Texas - Age 78 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
Last edited by triumphe64 : Sun Dec 9, 2012 at 03:42 PM.