Health Tips I Was Diagnosed with a Life-Threatening Blood Disease in College

Things got worse over the next four or five months, all I wanted to do was lie in my dorm room and sleep

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When you’re in college, health isn’t exactly top of mind—you think it’s normal to feel tired and low on energy. So during the fall of my senior year at the University of Georgia, I didn’t think much of how exhausted and headache-y I felt all the time. I didn’t have health insurance (I was 26 and off my parents’ plan), so I avoided going to the doctor and just kept popping Excedrin.

But things got worse over the next four or five months—all I wanted to do was lie in my dorm room and sleep, and I started getting winded just walking to class. I noticed when I went out to bars and got my hand stamped, a bruise would pop up in the stamp’s place. My legs were littered with bruises, too—I remember counting 20 on one leg at one point. Still, it never occurred to me that something could be seriously wrong. I blamed myself for studying too hard and staying up late.

When February rolled around, I was so tired I could barely walk up a flight of steps. I was also short of breath, so I finally forced myself to go to the campus health center. They drew my blood, and after a doctor examined me, I was told to go directly to an oncologist’s office in town—they had called ahead and he was expecting me. I showed up to the oncologist, still not believing I was actually sick, and a few minutes later he admitted me to the hospital.

The next couple of days were a blur. My parents drove up from Augusta, Georgia, there was more blood testing, and the world leukemia started to get thrown around—all signs were pointing to the blood cancer. I started freaking out. My parents wanted to bring me home, so I was transferred to a hospital there.

After two more weeks of testing and bone marrow biopsies, the doctors determined that it wasn’t actually leukemia (thank God), but aplastic anemia, a condition where your bone marrow doesn’t produce enough new blood cells. I was told I needed a bone marrow transplant, but without health insurance the doctor wanted us to pay $250,000 up front for the surgery. My family didn't have that kind of money, so I was transferred to another hospital—the National Institute of Health in Bethesda, Maryland—and they said they would cover the cost of treatment.

But with a new hospital came new tests, and the doctors at NIH determined I didn’t need a transplant. Instead, they said I needed cyclosporine, an immunosuppressant drug, which, according to the Aplastic Anemia and MDS International Foundation (AAMDS), would help my body start making red blood cells again, and ATG IV treatments, which would kill the cells that were attacking my bone marrow stem cells. I'd also need infusions of red blood cells and platelets because I was losing red blood cells through my kidneys at night.

I lived on these treatments for two years before getting another surprise: My aplastic anemia was now a condition known as paroxysmal nocturnal hemoglobinuria (PNH). It’s a rare, life-threatening blood disease that causes the destruction of red blood cells, blood clots, and impaired bone marrow function. The doctors aren't sure if I was misdiagnosed up front or if the anemia developed into PNH, as that happens in about 30 percent of PNH cases, according to Johns Hopkins Medicine. But for the next 10 years I lived on occasional blood transfusions, pain medications for my back and kidneys, and yearly iron transfusions to keep the disease under control.

This treatment plan was enough to keep me feeling okay—I even gave birth to three kids—but I was never 100 percent. Finally, in 2008, I was put on a clinical trial for a new PNH drug called Soliris, which is administered through an IV every two weeks. It worked, and has been pretty life-changing. It took a while to get my strength back, but I feel so good on the drug that I even started teaching fitness classes (which is crazy to me, considering where I was 10 years ago).

The scary thing about PNH is that there’s a 3 to 5 percent risk of it developing into leukemia, but I’m choosing not to be sidelined by my fears. Instead, I’m focused on keeping my body as strong and as healthy as I can, while trying not to think about the "what ifs” too much. Thankfully, running around with three very active kids means most days are more normal than I'd ever imagined they could be. That’s why I’m choosing to relish the good days for as long as I get to have them.

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