Stories of Hope

Beyond the statistics of bone marrow failure diseases are inspirational stories of hope and courage. From patients and families who fight these diseases to the volunteers in communities across the country who help to spread awareness, each of them has a story to tell.  

Meet these extraordinary people and learn more about them and their motivating stories of hope.  They are courageous and optimistic.  We know that you will find support and encouragement.

We welcome your story of hope - in print or on video. It will help many more patients and families.  Please email us at mystory@aamds.org or call Mike Breuer at (301) 279-7202 x111.  Thank you. 

Please visit this page frequently for new stories to read and share with your family and friends.

The Aplastic Anemia & MDS International Foundation (AA&MDSIF) created and maintains Stories of Hope as a service to those dealing with aplastic anemia, MDS, and PNH. Some of the stories on this site discuss medical treatment options patients have used; however, these stories are not intended as medical advice and should not be construed as such. AA&MDSIF recognizes that each patient, their treatment options, and the circumstances surrounding their bone marrow failure disease, is unique.

Note that inclusion of information in a Story of Hope does not constitute an endorsement or recommendation of any medical care provider, treatment practice, medication, product, or manufacturer. AA&MDSIF encourages patients to seek medical advice from a qualified hematologist/oncologist and to discuss their individual questions and concerns with their doctor. 
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I am involved in March for Marrow  because my sister Margaret has paroxysmal nocturnal hemoglobinuria (PNH). In 1999, Margaret began to struggle with debilitating fatigue. Although she consulted with a hematologist, she did not receive a correct diagnosis at that time....
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At the age of 3, I became ill with a rare blood disorder. I was bruising easily, and my platelet count was dangerously low. I was diagnosed to have ITP, had my spleen removed, and thought I was cured. However, my disease was either dormant or morphing into something else. My...
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Here’s a brief background and my current situation with MDS. I am now 77 and still dabble in helping people buy and sell small and medium-sized businesses. Keeps me occupied, gets me out of the house (my wonderful wife of 52 years appreciates that) and puts me in contact with...
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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 the fall involvement fair when I got a phone call from a nurse at my primary care doctor’s office with a concerned...
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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...
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About ten days after graduating college, most young people are ready to take a break, go to the beach or maybe 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...
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My husband, Rick, and I knew Jake was not feeling well. He kept denying it and saying he was fine. A bloody nose scared me and then I remembered my brother-in-law had them as a child and thought it was hereditary. Then his high school said he had another. He began to ask us if...
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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...
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It was early in April of 2015 when I started getting headaches, weaknesses, 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...
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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...