2015 marks the 25th year I have survived paroxysmal nocturnal hemoglobinuria paroxysmal nocturnal hemoglobinuria: (par-uk-SIZ-muhl nok-TURN-uhl hee-muh-gloe-buh-NYOOR-ee-uh) A rare and serious blood disease that causes red blood cells to break apart. Paroxysmal means sudden and irregular. Nocturnal means at night. Hemoglobinuria means hemoglobin in the urine. Hemoglobin is the red part of red blood cells. A… (PNH). How fortunate and blessed I feel that I’ve survived my PNH diagnosis for half my life.
The first thing I did after being diagnosed was to seek out the support of other patients. I found a small group of about five PNH patients on a Yahoo group chat site and was truly inspired by Rebecca Gaskin, who started the group. Although she suffered severe abdominal pain every day, she had huge aspirations to bring patients together, sell T-shirts for the cause and reach out to specialists for information she could share with us.
When Rebecca passed away, I felt I’d lost a true friend. She lived halfway across the country and we never met in person. But like me, she was a young wife and mother of two small children. I vowed to continue her work and have since worked with many people with PNH. Those I’ve been privileged to help have helped me more than they will ever know because this disease isn’t just a battle of the bone marrow, it’s an emotional and mental battle as well.