Stories of Hope
To better understand the impact of bone marrow failure, we present stories told by the patients, parents, family members, and spouses who are living with these illnesses. Our entire community benefits from the insightful stories patients and family members share with us about their personal journeys.
Fighting PNH with Perseverance and Spirit
Bunny Williams was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in the spring of 2000. Her symptoms were fatigue, stomach cramps, difficulty swallowing and jaundice. 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 and I…
Builds supportive community to help him with MDS and bone marrow transplant
When Duane Draper was diagnosed with MDS in July, 2009, the 57-year-old father of two grown children was asymptomatic and didn’t even realize that there was a problem with his health. Though he had been feeling slightly more fatigued, he attributed it to aging and didn’t worry about it. However, during a physical, his physician did some routine blood work and discovered that all three of his blood counts were low. “Initially, I was really surprised to learn that my blood counts were low,” says Draper. “I’ve always been really healthy, with no major health issues that people get, like high
Mary Upton, Aplastic Anemia Survivor, Springfield Virginia
After a couple of weeks of constant nose bleeds and mouth ulcers, three doctor visits and a bone marrow biopsy that showed hardly any cells, I was finally diagnosed with Sudden Severe Aplastic Anemia in November 1997 at the age of 45. NIH would not accept me as a patient and it was through the perseverance of Dr. Robert Brodsky, that Johns Hopkins accepted me, knowing that I was a full-time student with a maximum on my insurance policy that wouldn’t begin to cover all my medical expenses. I was given a choice of the usual treatment, ATG/Cyclosporin or a new protocol, High Dose Cytoxan
Rosalie Rifkin, Active Grandmother from Tarzana, California
I was diagnosed with MDS in about 2003 at age 63. I am now 72 years old and will be married 52 years in June. I have not taken medication for the last three years. I go to a wonderful doctor at UCLA who is doing research on MDS. I feel fine and I am not excessively tired. My hemoglobin is only 7.2, but my doctor says that if I feel alright, I don't need to take any medication. I get up early every morning and walk three to five miles. I play tennis, go clogging and hike. I also go to a gym several times a week and lift weights and take water exercise. In the summer, I swim 100 laps in my…