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Sep. 24, 2015

TOPIC: Featured News, Patient Stories

Jill Zeigler’s Story: Life with aHUS

Posted by Emily Fishman
Jill Ziegler, patient

“I am married and have a 9-year-old daughter. They were my motivation to keep fighting and get well.”

At age 28, sudden kidney failure changed Jill Zeigler’s life. After weeks spent in and out of different hospitals, Zeigler finally learned what the cause had been: an extremely rare disease called Atypical Hemolytic Uremic Syndrome (aHUS). This disease, characterized by premature destruction and removal of red blood cells, low platelet count, and severe kidney lesions is thought to be caused primarily through genetic alterations of the complement system, or a part of the immune system responsible for protecting our bodies from outside pathogens. Unfortunately for Zeigler, these abnormalities limited her treatment options due to the high likelihood of rejection through kidney transplantation.

With no treatment available, she traveled the country for three years looking for doctors and answers while she struggled with constant dialysis, gran mal seizures, and a stroke. But with the approval of Soliris for the treatment of aHUS in 2011, the prospect of a kidney transplant became possible. Zeigler found doctors at the University of Iowa who were willing to perform the transplantation, but due to the genetic pathogenesis of the disease, the kidney had to be donated from a non-related living donor. Zeigler took to Facebook in search of a donor, and “with a little help from a high school friend,” she found Lindsay Rouse who agreed to undergo the procedure. Nearly four years after the successful kidney transplantation, Zeigler is thankful for her doctors, medical treatment, her faith, and Rouse. Jill Zeigler is now married with a 9-year-old daughter. Today, at 35, she works as a pediatric occupational therapist and advocates for rare disease and dialysis patients in Jonesboro, Arkansas. To learn more about aHUS, please check out the The Atypical HUS Foundation, which is sponsoring the first annual aHUS Awareness Day on September 24, 2015.

Read more patient stories on NORD’s website and learn how to submit your own here.

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