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Stories of Hope

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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.

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...

Jamie Lam

Jamie Lam - PNH Patient Jamie Lam Resumes Favorite Sport

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 doctor after graduation, and I was put in the hospital the next day. My nurse came in and told me, “We are paging the doctor who does bone marrow biopsies to come back. He left to go home for the weekend, but I don’t...

Bridget Casey

Bridget Casey – PNH Survivor and Scholarship Recipient Uses Her Faith To Help Others

"I discovered that I might not live to my 40th birthday." One of the last things I expected in life was to be diagnosed with a rare disease.  After completing my PhD in Food Science at the University of Minnesota in 1998 and starting a career as a product development scientist, I began having symptoms of fatigue and easy bruising. It took three years and eight doctors to diagnose the disease as paroxysmal nocturnal hemoglobinuria (PNH). A physician at UCLA finally diagnosed me. ...

Alani Diaz

Alani tells how he has become his own best advocate

“I never even had a cavity before I was diagnosed with PNH, plenty of denial later, I now live my life with PNH in it and don’t let PNH run my life!” I lead an ordinary life, a healthy life.  My name is Alani and this is my story. I was born in Massachusetts, raised by my single mom.  I grew up with my older brother and little sister. I did ok in school but my passion was for riding bikes and skateboards.  The highlight of my childhood was racing BMX bikes every weekend. My mind enjoyed...

Kellie Day

Kellie Day, Debono Scholarship recipient

Kellie was diagnosed with aplastic anemia in March 2005 when she was eleven years old. After two years of unsuccessful treatment, she was diagnosed with a second disease: PNH. Fortunately, she was able to receive a life-saving bone marrow transplant from her brother at St. Jude Children’s Research Hospital. This fall, Kellie will continue her undergraduate studies at Carson-Newman University, in her home state of Tennessee, where she will begin her sophomore year. She is pursuing a degree in...

Ndeye Anta Sene

"PNH is a Part of Me" - Anta Sene finds that acceptance leads to hope

My name is Ndeye Anta Sene. I am 22 years old and live in Maryland.  I was born in Senegal, in West Africa and in December 2007 came to the United States by myself at age 16 due to medical issues. My symptoms, including fatigue, shortness of breath, and dizziness, started at the age of 14 while still living in Senegal. I was admitted to a hospital for a month because the doctors could not determine a diagnosis. They finally came to the conclusion that I had severe anemia and the only...