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.
Joe Ellenberger
Fighting PNH While Helping PNH Patients
I’m 31-years-old, and I was diagnosed with PNH in 2009 when I was 24.
I am generally athletic, and in college I was a wrestler. I knew what I could expect when training, competing, and recovering from competition. I transitioned from wresting to mixed martial arts (MMA) in 2008. Naturally, when I started that, I wanted to be sure that my training and recovery were the best they could be.
I was 9-0 as a Professional in MMA and had my tenth fight in July 2009. About halfway through training for...
Kathryn Bradley
Saved by Her Twin Sister
I was your typical 14 year old teenager who always enjoyed spending time with friends and playing sports. On and off for about two years, my parents would take me to see different doctors to figure out why I had aches and pains, stomach issues and fatigue.
When I tried out for the middle school volleyball team, I remember that every time the ball bounced off my arms it would leave a terrible bruise. I wore arm pads in hopes it would help, but unfortunately it didn’t, so I had to stop playing...
Katie Begin
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...
Bryce Harding
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...
Steven Coffin
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...
Won Kyun Koh
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...
Caitlin Hughes
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...
Tami Meidinger
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...
Kaitlin Gibson
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...
Emily Hoak
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...