aHUS REAL STORIES

Meet Erica

Diagnosed with aHUS at 22 years old

Erica was expecting to have a fun family vacation at the beach, but instead spent a week exhausted in bed with a fever, sore throat, and chills. Unfortunately, her condition did not improve, and Erica went to the emergency room after she became very dizzy. That visit turned into 27 days of in-patient care at the hospital.

Erica, diagnosed with aHUS at 22 years old

After months of being misdiagnosed and with little improvement in her symptoms, Erica’s doctors determined that she was suffering from 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 year, Erica underwent dialysis and experienced nausea, exhaustion, and blood clots. Her kidneys became severely damaged, and she lost vision in her left eye due to a retinal blood clot. She tried to keep up with her work and daily activities, but her illness became too much. She took a leave of absence from her job as a preschool teacher and applied to receive a kidney transplant.

Erica, diagnosed with aHUS at 22 years old, mixing paint

Eventually, Erica and her physician were able to get her aHUS under control. Her kidney function improved, and she no longer required a transplant. She went back to work full-time and resumed her daily activities, something she once thought would never be possible.

“When my aHUS kept me from going to work and doing what I love, I began to lose hope. I’m so thankful that I am back to living my life.”

References:

  1. Benz K, Amann K. Thrombotic microangiopathy: new insights. Curr Opin Nephrol Hypertens. 2010;19(3):242-247.
  2. Tsai HM. The molecular biology of thrombotic microangiopathy. Kidney Int. 2006;70(1):16-23.