He continued to have symptoms such as dark urine, difficulty swallowing, and back pain. After trying unsuccessfully for 2 years to treat his anemia, his doctor referred him to a specialist, who diagnosed him with paroxysmal nocturnal hemoglobinuria (PNH)—a rare, life-threatening blood disorder in which uncontrolled activation of the complement system leads to the chronic destruction of red blood cells.1,2
When he was first diagnosed in his mid-20s, Victor says he was devastated and felt as if he had crawled into a cave. He was getting blood transfusions monthly, had little energy, and was told he might only have 10 more years to live. The most difficult thing about having PNH was missing out on activities with friends and family and the toll it took on him mentally. He became depressed. “People were doing things without me, and I felt like I wasn’t a part of normal society,” he says. “I didn’t want to talk to people.”
Victor and his doctor discussed options and he began appropriate management of his PNH. He also joined a support group at his wife’s suggestion, which radically changed his outlook.
“When I went to the first meeting and shared my story, I realized it’s important to know you are not alone and that there is hope,” Victor says. “It gave me a sense of comfort and encouragement. Now I know that others can benefit from my experience, and I want to be an inspiration to them.”