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.

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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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...
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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...
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I was 21 years old in March of 2011 when I first began to exhibit the telltale symptoms of low hemoglobin: I constantly felt faint and out of breath. When I sat up in bed, my head would spin for minutes; and I always felt cold. Of course it never occurred to me that I might have...
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I realized something wasn’t right when I was out of breath from simply walking up a hill to get to class during my senior year in college. I had been an active fencer since high school, and it didn’t make sense that walking up a hill would give me so much trouble. I visited my...
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At AA&MDSIF, we deeply appreciate the vital role nurses play in patient care – they are wonderful listeners, educators, motivators, and knowledgeable professionals who make a difference every day in the lives of so many patients and families. This past May, in celebration of...
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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...
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Volleyball, basketball, softball, church, friends, and boys: this was my life at 17 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...
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My name is Martha Sue Porter and I celebrated my seventy-second birthday on May 7th of this year. I have MDS and this is my third year as a survivor having been diagnosed in September 2011. I have an older son and daughter-in-law who have two young children - my delightful...
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“My Dad passed away in 2011 due to complications from MDS, and I am looking for a way to help raise funds for this cause in his memory.” With this simple email message, the idea for the South River Hope, Steps & A Cure Walk/5K Run was born! Family member and AA&MDSIF...
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At AA&MDSIF, we know that nurses are vital partners in patient care – they are wonderful listeners, educators, motivators, and knowledgeable professionals who make a difference every day in the lives of so many patients and families. In celebration of National Nurses Week...