After a battery of tests, she was diagnosed with atypical hemolytic uremic syndrome (aHUS), a rare, life-threatening, chronic genetic disease that can either be caused by genetics or a trigger that can progressively damage vital organs that can lead to stroke, heart attack, kidney failure, and death.1,2
Over the next 2 years, Jill faced an onslaught of dialysis, nausea, exhaustion, dangerously high blood pressure, and seizures. She tried to maintain some semblance of a normal life with her family, but she remained in end-stage kidney failure and on permanent dialysis. She was told that a transplant was not an option because her disease would likely attack the donor kidney.
Things took a turn for the better in 2011 when Jill and her doctor were eventually able to get her aHUS under control. She had a successful kidney transplant and was able to see her daughter off to her first day of kindergarten.
Jill has now returned to work and says her life has changed. “This grim, scary blood disease seems manageable.” To all those newly diagnosed with aHUS, Jill has a simple but powerful message: “Help is out there, and we’re not alone anymore.”