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.
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...
Derek Cope
"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...
Colin Powell
Comedy Became My Drug
It was early April of 2015 when I started getting headaches, weakness and abnormal heart rates simultaneously whenever I exerted myself. Stairs became a nemesis, as I could feel myself about to faint whenever I reached my apartment on the third floor. I thought that now would be a good time to visit the doctor. There I had blood work done and a few hours later they called and told me to go to the ER immediately. “So…I shouldn’t go hiking right now?” I joked, despite the weakness in my legs....
Mariah McHenry
BMT Meant 'It Could Finally Be Over '
At the last race of my high school cross country career, I stood on the starting line with one hundred other girls and repeated only one thought - “just finish”. I didn’t think about winning. I didn’t think about beating any records or trying to beat anyone, for that matter. I just wanted to finish. I wanted to look back and know that I did this one thing for me. I wanted to know that I did something that scared me, something that no one expected me to do, and something that I wasn’t even sure...
Marc Rogier
My Nurses Were an Inspiration
In November 2013, I was 22 years-old and going to school part-time for nursing while working as a Certified Nursing Assistant at an assisted living home. I was almost through my first semester of classes when I got a cold. I didn’t think much of it because my girlfriend, Abby, had been sick a few days before. By the end of the week I wasn’t feeling much better. Little pink dots (petechiae) on my arms and legs started to appear.
Over the next few days, I visited the doctor, went for lab work,...
Gloria Winter
Disease Won't Run My Life
My odyssey with bone marrow failure diseases began on Mother’s Day, 2007 when I found a deer tick embedded in my upper arm. Three weeks later, a positive Lyme’s disease test qualified me for ten days of doxycycline (an antibiotic). About six or seven days into my treatment, I was feeling worse, and called my primary care physician.
One day later, after receiving a blood test, my physician called and instructed me to have someone drive me immediately to the local emergency room for a blood...
Ellen O. Kalinosky
Biting into the Elephant
I believe that a story is the shortest distance between two people. While this is my story, it is not just mine, and I did not do any of this alone. In April 1983, my husband Joe and I were 25 years old and attending to the required pre-marital blood work. Next thing we knew, we were sitting in a doctor’s office because my blood counts were abnormally low. They told us there was something wrong, but they didn’t know what it was. Referring us to a hematologist/oncologist, we were told I would...
Heather Vega
Doctor Helps Determine Her Own Aplastic Anemia and PNH Diagnosis
“I was fortunate to have a medical background, because with it I was able to help diagnose myself with aplastic anemia and PNH,” says Dr. Heather Vega. A Pittsburgh native, she is a family physician living in Bridgeville, Pennsylvania who received her medical degree from Lake Erie College of Osteopathic Medicine.
“I was 30 years old and in a hospital-based practice 12 years ago when I noticed a bruise on my leg,” says Vega. “It was so strange because a few nights prior, I had just had a...