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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.

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...

Mary Jo Moss

Aplastic Anemia Patient Meets Physician Who Treated Her 30 Years Ago

For so long, I have been quietly racking up the years - 33 in all - since my diagnosis and transplant. I have done so well and had so few problems that I felt I had nothing to share. But as the years have gone by, I have begun to realize how few of us long-term survivors there are and how truly blessed I am to just be alive! By reading the comments when I post a milestone birthday, I am overwhelmed with the response from others who have walked this path, who are just beginning the journey, or...

Yajaira Suarez

Young Aplastic Anemia Patient Grateful That Life is Returning to Normal

My name is Yajaira and I am 24-years-old, and live in Victorville, California. It has been about two years since I was diagnosed with aplastic anemia. I was a very active, outdoor person who played sports. Never did I think in a million years this could ever happen to me, but it did. I had just started my new job where I met Teresa, my manager. After four months of working there, she noticed there was something different about me. My skin was pale and bruised. I would get sick constantly and...

Jordan Brown

Family’s Support Spurs Recovery

On July 4th, 2014, my 23-year-old son, Jordan, coming from the Washington DC suburbs, visited us (Barnett and Nelda Brown) in La Place, Louisiana. He wasn’t feeling well, so I convinced him to go to urgent care before leaving to return home. He was given antibiotics because he appeared to have three cysts in his left arm. He made a second trip to urgent care in Virginia to have the cysts lanced and was given a blood test during the procedure. On Monday July 14th, I received a call at 7 am...

Kimberly Woudenberg

Knowing What it Takes

“Walking into a chemotherapy room is not an easy thing to do, even if you know that it is the best thing for you.” I was diagnosed with PNH in 2009 at the age of twenty-two. In my eyes, I was invincible. I could even count how many times I had gotten sick throughout my life on one hand. So accepting the diagnosis was not easy. I was six months pregnant and pushed all of my worries and fears about my disease onto how it would affect my son. After months of constant anxiety and blood...