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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.

Shirley O’Brien

A Remarkable Response in a Clinical Trial

In February 2012, I was diagnosed with myelodysplastic syndrome (MDS), a disease that has no cure except for a stem cell transplant. Because I was in my mid-70s, a bone marrow transplant wasn’t the best option. At the time of the diagnosis, my spouse, Jim, and I had been retired for eight years as professors from the University of Arizona, and we were enjoying busy lives performing at festivals, singing and accompanying ourselves on our digital accordions. We had planned a cruise in less than...

Stephen King

Patient, Educator, and Volunteer

A PNH survivor for more than 25 years, Stephen King speaks about his life as a patient and an advocate in both formal and informal roles -- and offers advice for newly diagnosed PNH patients.  “I’m an engineer with a problem-solving orientation,” says the medical software manager from Atlanta, Georgia. “After my diagnosis, I thought, now that you know what it is, let’s fix it. It took a little time to sink in that there was no quick fix, and I had to learn more about it.” Early Diagnosis...

Al Meyer

A Rare Case of Aplastic Anemia Later in Life Won't Stop Me

I grew up in Louisiana - born in New Orleans and raised in Lafayette. I joined the Army, and went to Seattle and worked at Madigan General Hospital where I met my wife. I was then sent to Vietnam. After I returned, I worked for a bank in Seattle for 16 years, becoming a vice president and manager. I helped finance an auto auction as part of this job, and as a result, I fell in love with the car businesses.  I was accepted for a Ford training program that lasted for two years at a Seattle Ford...

Kendra Arvon

Thankful to Be Here and Alive

I was a very active 17-year-old when I got the news. It was October of 2005, the beginning of high school basketball season in my hometown of Beckley, West Virginia, when I became ill. I thought it was a really bad cold or even the flu, but I was used to being sick and fighting through it, so I didn’t think much about it. I started antibiotics while I continued going to school and playing basketball. I would start to feel better for a while, then BOOM, it would hit me like lightning again. I...

Brittany Springer

Aplastic Anemia Patient “Just Focused on Beating It”

In February of 2011 I was 22-years-old and attending Orange Coast College. One day I began to notice that I was bruising easily. My legs were covered in bruises by the time I went to my doctor.  The doctor told me I was probably anemic and run down due to my work and school schedule. She ran a regular CBC blood test.  The next day,  I was surprised to see I had missed a call from her. It was after five o’clock so I figured I would call her the next day. I was not feeling sick - maybe a little...

Robin Grapa

A spirit of adventure helps her live life to the fullest

I was a freshman in college when I was diagnosed with aplastic anemia. I didn't have a bone marrow donor match, so I opted for the ATG and cyclosporine treatment. After experiencing seizures, which are a rare side effect to the treatment, I began the slow process of recovery. I felt very blessed that my blood counts began to climb, and eventually leveled out around normal and stayed there ever since. It was seven years after my treatment when my doctor mentioned "complete remission" to me. I...

Ron Duncan

Ron Duncan, Texas Walk Committee

I last gave blood in December 2004.  When I went again in March 2005, I was informed that I couldn't give  and actually really needed a transfusion. Eventually I was diagnosed with pure red cell aplasia, PRCA, a very rare condition where I don't make red blood cells. I struggled with transfusions and various medications for about three years. In April 2008, I found Dr. Maciejewski at the Cleveland Clinic and a doctor at the local medical school here in Dallas. They added an additional...

Heather Putney

Heather Putney’s Trials (and Travels) with Aplastic Anemia

There is no shortage of milestones when you are healing following a bone marrow transplant.  You have the inevitable counting of days; day 21: being discharged from the hospital; day 90: having fresh produce; day 142: spending the start of Thanksgiving by jogging a 5K, day 300: biking 50 miles with a custom BMT survivor jersey to raise awareness for marrow donation; day 365: my new first birthday and a goodbye to precautions and meds; day 380: returning to work as a health care provider rather...

Ashley Oakes

Ashley Oakes – Blessed to Have Her Son, Her Family, and Her Life

It has been two-and-a-half years since being diagnosed with aplastic anemia. In September 2010, my husband, Scott, and I moved home to Vancouver, British Columbia from Calgary, Alberta where we had been living for the previous three years. I was six months pregnant and so excited to be going back to the city where all our family lived to share this wonderful time with them. We moved into a little house a few blocks from my mom and settled in to await the arrival of our little one. A few weeks...

Kathryn Bauer

Retired MDS Patient Living Life to the Fullest Since Transplant

I retired from Dun & Bradstreet, after 35 years of working all over the US and Europe as a business analyst and Vice President of Operations and Data Acquisition.  I was living the life I had always aspired to -- traveling, volunteering for a number of non-profit organizations, taking the occasional consulting job, enjoying a few classes at the local college, and just having fun. Then, in August 2009, I had a blood test and it showed something was off with my white and red blood cells. I...