Alyssa was scared. “I don't remember a whole lot,” she said. “I remember being terrified. I just feel like I went from living a normal life to sitting in a hospital room having no idea if I was going to be alive the next day.”
Alyssa’s symptoms continued to progress. She began having seizures and was put into a medically induced coma for several days.
Her dad, Dave, recalls how difficult it was for a parent. “Watching her was probably the hardest thing we've ever done. We never left her. For almost a year in and out of the hospital, we stayed with her every single night.”
After months of uncertainty and an initial misdiagnosis, a hematologist finally diagnosed Alyssa with atypical hemolytic uremic syndrome (aHUS), which is a rare, progressive, chronic disease with relapses and is a type of thrombotic microangiopathy (TMA). TMAs are a group of potentially life-threatening rare disorders that cause blood clots and damage to small blood vessels. This may result in injury or failure to organs, including the kidneys.1-8
Eventually, it was clear to doctors that Alyssa needed a kidney transplant. A family member was a match, and in 2010, Alyssa underwent a successful kidney transplant.
Today, Alyssa’s hematologist continues to help her manage the disease.
Alyssa and her husband, Bryant, got married in 2022 and are enjoying their new life together.
In the future, Alyssa hopes to provide support to the aHUS community. “I would love to be working in some sort of patient advocacy [role],” says Alyssa. “I am very passionate about that. I felt like my parents were such amazing advocates for me, and I know there's so many people out there that don't have that, and I would love to help in that field.”