She was admitted and treated for a suspected bacterial infection with antibiotics and pain medicine and discharged once her symptoms subsided.
Over the next year and a half, Julia was admitted to the hospital several more times. She saw countless physicians and underwent many tests and medical procedures, including a bone marrow biopsy, renal biopsy, and multiple platelet and blood infusions. “I saw doctors in oncology, rheumatology, nephrology, infectious disease, hematology—all different specialties. It was hard to see that many specialties and hear them all say, ‘I don’t know,’” recalls Julia.
The summer before her sophomore year of high school, Julia’s condition deteriorated. Besides unbearable pain and nausea, she was experiencing kidney failure. Her father rushed her to a specialist at a hospital more than 100 miles away, hoping they would finally find the root of her symptoms. “I was watching Julia in my passenger seat, all curled up in excruciating pain, trying to console her the best I could. I wish no parent would have to see their child go through that,” remembers Julia’s father, David.
Julia was ultimately diagnosed with atypical hemolytic uremic syndrome (aHUS), a rare, genetic, chronic, and life-threatening 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. Once confirming this diagnosis, Julia’s doctors were able to begin to manage her aHUS.1,2
“I remember the day I was diagnosed. It was relieving because not only was there a diagnosis but there was an answer. That was the most relieving part about it,” recalls Julia.