Bunny Williams was diagnosed with 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) in the spring of 2000. Her symptoms were fatigue, stomach cramps, difficulty swallowing and jaundice jaundice: A yellow coloring to the eyes and/or skin due to an increased level of bilirubin, which is a breakdown product of hemoglobin. . At the Phoenix Regional Patient and Family conference in March 2011, Bunny shared her story with other patients and families at the Celebration of Hope ceremony.
In Bunny’s Own Words
I would spend a good portion of the day on the sofa. My husband got the meals, washed dishes, did the laundry and cleaned the house. I felt so guilty that I wasn't able to do the things that I had always done.
My hematologist hematologist: (hee-muh-TOL-uh-jist) A doctor who specializes in treating blood diseases and disorders of blood producing organs. and I agreed on the medication (eculizumab, known as Soliris®) I should have. When I requested the medication for my PNH, my HMO said no. A PNH specialist and my doctor wrote magnificent letters on my behalf. It took 4 1/2 months of fighting the HMO for me to get the authorization to receive it. My case went all the way to an independent committee... and I won! So if your health insurance company says no, you don't have to give up because you can appeal a decision.
Since I have been on Soliris, I have none of my former symptoms. It is not a cure for PNH, but it is a treatment. I have so much more energy. My quality of life has been restored. My husband is constantly saying, "I'm so proud of you."
Through this, I've learned that I'm a fighter. I think it is important to stay positive. Always keep your head up and don't look down. I'm not going to let PNH get the best of me. I have built friendships through my association with AA&MDSIF and by being a part of their Peer Support group. I still have love, hope and faith, and these will last a lifetime.