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My hematologist made the final diagnosis. At first, it was disbelief, but then I was happy. I was extremely happy, having gone so many years not knowing what was continuing to disrupt the functions of my body.” 

Dana

LIVING WITH aHUS

At 25 years old, Dana’s journey to being diagnosed with atypical hemolytic uremic syndrome (aHUS) began with kidney failure. After running several tests and still being unsure of the cause of his kidney failure, Dana’s doctor gave him two options: to have a kidney transplant or go on dialysis. So, his father did what any father would do and became his son’s kidney donor. However, within a year of the transplant, Dana experienced a second kidney failure and was forced to go on dialysis. Eight years later, he received a second kidney donation. Unfortunately, within a year he lost that kidney as well. His doctors eventually diagnosed him with thrombotic thrombocytopenic purpura (TTP) and he returned to dialysis. Several years later, Dana came across an article about a woman with a nearly identical story, and she had been diagnosed with aHUS. He shared the story with his nephrologist who, after consulting with his hematologist-oncologist, finally diagnosed him with aHUS, 15 years after his initial kidney failure.