PNH REAL STORIES

Meet Victor

Diagnosed with PNH at 27 years old

When Victor was in his twenties, he was working in the concert security industry and planning to marry his fiancée when he began having health issues. He started experiencing fatigue, unexplained bruising, abdominal pain, back pain and dark urine. His doctor advised him to go immediately to the hospital, where he was diagnosed with aplastic anemia in 2002.

Victor

Victor remained hospitalized for one month, including a few days in the intensive care unit. His joints became swollen, and he lost the ability to walk. It took time and persistence, but Victor eventually learned how to walk again. For several years, he received a blood transfusion approximately once a month.

After his symptoms continued, Victor was referred to a hematologist-oncologist who diagnosed him with paroxysmal nocturnal hemoglobinuria (PNH) at the age of 27. PNH is a rare, chronic, progressive, and potentially life-threatening blood disorder.1,2 It is characterized by red blood cell destruction within blood vessels and white blood cell and platelet activation, which can result in blood clots.1,2 At the time, there weren’t any treatments available for PNH, which was difficult news for Victor and his wife, Stephanie, to hear.

“One of the hardest things for her was realizing that the lifespan was 10 years, so we didn't know if there was a future for us,” Victor said.3 “She wanted to have children, and we didn't know if that was going to be possible.”

Victor and Stephanie welcomed their first child in 2010; their younger son was born two years later.

Stephanie struggled with her own health issues, and in 2022, she passed away at the age of 46.

Over the years, Victor has continued to work with his doctor and care team to manage his disease. 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.”

Victor Victor Victor Victor

Today, in addition to raising his two children, he hopes to honor his wife’s legacy by helping other people living with PNH.

“My advice to a new patient would be: take it one step at a time. You get up, and you fall. But you keep going. And you keep trying, and you just move forward. Embrace the journey; make it your own.”


References:

  1. Jang, J. H., et al. (2024) Impact of Lactate Dehydrogenase and Hemoglobin Levels on Clinical Outcomes in Patients with Paroxysmal Nocturnal Hemoglobinuria: Results from the National Korean PNH Registry. Journal of Korean Medical Science, 39(8), e81.
  2. Rother R., et al. (2005) The Clinical Sequelae of Intravascular Hemolysis and Extracellular Plasma Hemoglobin: A Novel Mechanism of Human Disease. Journal of the American Medical Association, 293(13), 1653-1662.
  3. Sharma V. R. (2013) Paroxysmal Nocturnal Hemoglobinuria: Pathogenesis, Testing, and Diagnosis. Clinical Advances in Hematology & Oncology, 11 Suppl 13(9), 2-8.

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