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Having these illnesses has been hard. It’s emotionally hard. Being diagnosed the first time around was really difficult. I don’t like the unknown – it scares me and I’m sure it scares a lot of people.”

Lisa

LIVING WITH PNH

In 2003, Lisa was living in Canada when she began to develop large bruises on her legs that would not go away. Concerned, she visited her doctor who performed several rounds of blood work, none of which gave them an answer. Several days after her final round of blood work, she received a call from her doctor saying she needed to have an emergency bone marrow biopsy. Her first thought was that she had leukemia – she was scared. But she didn’t have leukemia. She was diagnosed with severe aplastic anemia and a small clone of paroxysmal nocturnal hemoglobinuria (PNH). She began treatment for severe aplastic anemia and, with her health improved, she eventually began Dragon Boat (crew) racing. However, in 2007 her PNH began to progress and she grew increasingly symptomatic. Once approved, she began treatment and eventually was able to return to racing. Today, she continues to receive treatment and is training for her next big race.