Added by Cassie on May 22, 2013 at 11:58pm — No Comments
It has come to my attention that there is some confusion about what Soliris will and will not do. Let me tell you what it does first and then we'll talk about what it does not do. Soliris shuts off the compliment system which activates aHUS activity, which, of course can be devastating. Fevers are not indicators that will be fixed by an infusion of Soliris. Fevers can mean line infections, which Soliris doesn't treat, you need an antibiotic for that, fevers can mean meningitis or flu, a…Continue
Added by Cheryl Biermann on May 21, 2013 at 7:56pm — No Comments
I am a 38 year old mother of 3 great children. Just before Easter this year, I was admitted into the hospital. Originally I went to the Doctor because I was having clotting in my nose, severe headaches, and vomitting. The Dr. did a CAT scan of my head to make sure there was nothing going on there because of the headaches. He also did lab work. The lab work came back and I was in acute renal failure. My creatinine was 10.6 (normal values are up to 1.3). He admitted me to the hospital…Continue
Just a reminder to add the UKaHUS team to your prayers tonight, they presented their patition to parliment today.
Regardless of air traffic snarls and long car trips, aHUS patients and their families traveled to New Jersey for a regional aHUS meeting sponsored by NORD (National Organization of Rare Disorders) on April 26th and 27th, 2013. The event began with a…Continue
Added by Linda Burke on May 2, 2013 at 7:20pm — No Comments