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.

Dylan Martin

MDS Patient Becomes a Role Model

My name is Dylan Martin. I am 24-years old and I was diagnosed myelodysplastic syndromes (MDS), or, at the age of 17. It is familial MDS - the cancer runs in my family. When my mother, Leigh Ann, was first diagnosed, doctors told her she would never have to worry about my brother and I having it. Unfortunately, the doctors were incorrect. When my brother, Patrick, was 19, he was also diagnosed. About a year and a half ago my grandmother, Mary, found out that she had MDS. According to 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...

Melanie Marquez

Hope in Action

This year marks the 25th year I have survived paroxysmal nocturnal hemoglobinuria. (PNH) How fortunate and blessed I feel, that I can say half my life I have survived my PNH diagnosis. Taking a look back at how my journey started -- just having completed college and newly married -- the first thing I did after being diagnosed was to seek out the support of other patients. I found help through the National Organization for Rare Disorders (NORD) who mailed me a list of about ten patients...

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...

Emma Pritchett

A Story of Hope

“Faith, hope and endurance are imperative to living a life full of possibilities with PNH,” says Emma Pritchett, who has lived with paroxysmal nocturnal hemoglobinuria for 20 years. “The diagnosis was a shock because the disease is so rare.” Emma and her husband Dennis, a scheduling manager for Carrier Transicold United Technologies, live in Watkinsville, Georgia. They were married in 1993 and were eager to start their family. They were elated when Emma became pregnant but soon noticed...

Jill Whitney

Since my diagnosis, my mission has been to fight back

My journey with MDS (myelodysplastic syndromes) began in December 2007 when a game of volleyball with my youngest daughter left my arms bruised from wrist to elbow. This along with frequent headaches and fatigue prompted me to schedule an appointment for a physical. Little did I know my life was about to change forever. We were getting ready to depart on a cruise to Cabo San Lucas, Mexico to celebrate my in-laws’ 50th anniversary; however, my hematologist wouldn't allow me to go until a bone...

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