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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About 21/2 years ago I was diagnosed with myelodysplastic syndrome (MDS) a disease that has no cure except for a transplant, which takes a year or more out of your life.  The statistics for survival and/or a good quality of life afterwards can be grim.   ...
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This is the story of my beautiful granddaughter Annie, who celebrated her 13th birthday this April 2014.  It’s also the story of Annie’s big sister Katherine, as well as of her mother Melissa, and her father, Tom (my son).  When my husband and I picked Annie up from...
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My name is Catherine Pantanella.  I was first diagnosed with Aplastic Anemia in October 2000, at 35 years old, just 9 months after the birth of my youngest daughter.  Some cases of Aplastic Anemia they do not know what the cause is, as in the case with me.  ...
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My hands shivered as I carefully composed the flower on the nurse’s slim hands. “Are you nervous, sweetie?” she asked. I knew the tremors were not due to nervousness, but due to the effects of my medication, cyclosporine. Thankfully, I was still able to articulate the henna...
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Sandy Cooper, along with her family and friends, have organized the Alicia Cooper Memorial Hope, Steps, & A Cure Walk. This walk is being held in memory of her daughter Alicia, who passed away at age 17 in January 2010 from aplastic anemia, after a very short 2 ½ month...
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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...