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.
A patient and her parents find that giving back is its own reward
In March 2011, our daughter Katie had just turned 5 and we noticed small bruises all over her body. We wondered if they were happening at preschool. We went in for a visit with her doctor and we expressed our concerns. Blood work showed very low counts and we immediately went to the emergency room at Arnold Palmer Hospital for Children in Orlando. Katie went through many tests and a bone marrow biopsy, and was diagnosed with severe aplastic anemia. Katie moved to treatment within one week of diagnosis and received the standard regimen of horse ATG, augmented with prednisone and cyclosporine…
Moving Past Aplastic Anemia
Diagnosed with aplastic anemia in 2012, Bryce Harding is back on track with life. In 2012, Bryce was working in a silver refinery. Friends had been telling him for months that he didn’t look well, but he resisted making an appointment with the doctor. After nearly passing out at work one strenuous day, he finally agreed that it was time for a checkup. Two days after that appointment, he got an urgent phone call from the doctor’s office. The message was stark -- get to the nearest hospital as quickly as possible. That hospital visit, where he was given four units of blood, was the first of…
Biology Teacher Battles PNH
Steve Coffin considers himself lucky. Diagnosed with PNH in 2015, he is grateful that he has responded well to eculizumab (Soliris®) treatment. “I’m incredibly fortunate,” he said. “It’s doing exactly what it’s supposed to do.” Steve, a 34-year-old avid runner, always lived an active lifestyle, but he had also sometimes experienced unexplained issues with fatigue over the years. In February, after a bout with the flu, he woke up at four in the morning with severe abdominal pains. “Within three or four breaths, I knew I had to get to the hospital,” he states. The hospital ran test after test…
From Patient to PhD Candidate
When I was 13 years old, I was diagnosed with severe aplastic anemia. Doctors told my parents that I had six months to live unless I could find a matching stem cell donor. In Korea, where I’m originally from, much less was known about aplastic anemia than is the case today and the only treatment option given to patients was bone marrow transplant. Unfortunately, no potential donors were located and as a desperate measure, my family looked elsewhere for alternative treatment options. We were able to contact a renowned pediatrician in Japan, who suggested immunosuppressive therapy. The next…
Patient Inspires Workplace Giving
I was just past my 19th birthday when my family and I realized that something was severely wrong with my health. Throughout high school I was always fatigued, and bruised very easily. I also experienced what I now know as petechiae – little red dots all over my body caused by bleeding into the skin due to low platelet counts. After I got to know what the symptoms of aplastic anemia were, I later realized that I had at least some degree of the deficiency for about two years before I was diagnosed in 2008. As happens with many other patients, we first knew something wasn’t right when blood…
My Son, the Athlete and Survivor
I am the mother of 4 boys, now ages 13, 14, 18, and 20, and we live in North Dakota. We took our third son Samuel to the doctor just before Christmas of 2008 when he was 7, and it was about a month and many tests later that he was finally diagnosed with severe aplastic anemia (SAA). The whole family was tested at the Mayo clinic for a bone marrow match, but none of us were a match. Sam then received immunosuppressive therapy and he responded quickly and quite well to cyclosporine. But once he was weaned off that drug, his platelets began a slow descent to the point where, about a year later…
Aplastic Anemia Alters Student's Perspective
It was August 2011, two days into the fall semester of my junior year of college at Penn State. I was excited to be surrounded by friends as we ran a booth for a fall fair when I got a phone call from a nurse at my primary care doctor’s office. She sounded concerned, so I quickly tried to weave my way out of the crowd to a quieter environment when I heard her say “are you bleeding right now?!” How does one respond to that kind of question? I replied, “No. And why?” She told me, “You’re extremely anemic. You need to see a hematologist as soon as possible and if you start bleeding go to the
Persistence and Patience Pays Off
My professional career for thirty years was with Colonial Williamsburg. I led children, adults, and even a king and queen on tours to explore our colonial history. I retired and shortly after turning 66, I was diagnosed with rheumatoid arthritis and treated with methotrexate. This may have led to my developing severe aplastic anemia, although it cannot be proven that methotrexate was the cause. I was determined to take control and sought additional advice from Johns Hopkins Hospital. My local doctor was very supportive. Within four months, and after having transfusions every four weeks, I…
"You Can't Beat Me!"
After graduating college, most young people are ready to take a break, go to the beach or maybe on a trip to Europe before getting serious again. Not two-time Matthew Debono Scholarship recipient Derek Cope. Derek embarked on a three-week study-abroad trip in June to Tanzania, where he visited hospitals, schools and orphanages to learn how health is delivered in Africa. Derek lives life like there’s not a moment to waste. His diagnosis of aplastic anemia has a lot to do with that. In the fall of 2009, Derek was engaged in a challenging pre-med curriculum at Stony Brook University in New…
“Mom, it’s too late. I’m dying.”
My husband Rick and I knew Jake was not feeling well. He kept denying it and saying he was fine. A bloody nose scared me, and then I remembered how my brother-in-law had them as a child and thought it was hereditary. Then his high school said he had another. He began to ask us if he looked pale. We said that he did. He also was coughing and seemed lethargic. We encouraged him to go to the doctor, but he said he was fine. It must have been divine intervention, because when his truck broke down, I had a chance to bring him to school where he was in his senior year, and on the ride I begged…