web exclusive | Aplastic Anemia and MDS International Foundation

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An Unusual Route to Diagnosis

Person's Name: 
Jane Massey

Although it sounds strange. I am beginning to believe that breast cancer possibly has saved my life. In October 2015, I was diagnosed with stage 2 lobular carcinoma of the breast. My cancer was found during my routine mammogram.

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Bone Marrow Diseases: 

Battling Aplastic Anemia, Seeking Information

Person's Name: 
Mary Swift

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 symptoms recurred with pregnancy, and after my second child was born, my disease was never dormant again.

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Bone Marrow Diseases: 

Comedy Became My Drug

Person's Name: 
Colin Powell

It was early April of 2015 when I started getting headaches, weakness 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 now would be a good time to visit the doctor. There I had blood work done and a few hours later they called and told me to go to the ER immediately.  “So…I shouldn’t go hiking right now?” I joked, despite the weakness in my legs.

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Bone Marrow Diseases: 

Cousin Helps Cousin

Person's Name: 
AnnaLeigh

AnnaLeigh is a 5 year old little girl in our family. She has the most warming smile, joyful eyes, and a radiant shade of red hair. She is the typical 5 year old who dreams of princesses, lady bugs, and playing outside.

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Peter Sonnentag, 5K Chair

Person's Name: 
Peter Sonnentag

I met my beautiful wife Claire, Dave’s stepdaughter, after graduating from the UW. In the years since, Claire and I have built a wonderful life and had two amazing children together.  I feel extremely lucky to have had Dave in my children’s lives as well as my own, if only for a few short years.  The impact he’s had on our family has been immeasurable.  I had never known someone so well regarded and loved by an entire community.

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Patient, Educator, and Volunteer

Person's Name: 
Stephen King

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, Treatment and Emphasis on Self-Advocacy

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Being able to help and empower people really appealed to me."

Person's Name: 
Barbara Weinstein

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 National Nurses Week, we asked patients to tell us about their favorite nurse. Four different individuals wrote to tell us about one particular nurse - Barbara Weinstein, RN, BSN, CCRP, a Research Nurse Specialist at the National Heart, Lung, and Blood Institute – and what she has meant to them.

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