Stories of Hope
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.
Aplastic Anemia Patient “Just Focused on Beating It”
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 schedule. She ran a regular CBC blood test. The next day, I was surprised to see I had missed a call from her. It was after five o’clock so I figured I would call her the next day. I was not feeling sick - maybe a little tired - but not sick. My phone rang that night at 6pm. It was my doctor telling me she was referring…
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. After learning more about it, I discovered that I might not live to my 40th birthday. Unfortunately, I also learned…
A spirit of adventure helps her live life to the fullest
I was a freshman in college when I was diagnosed with aplastic anemia. I didn't have a bone marrow donor match, so I opted for the ATG and cyclosporine treatment. After experiencing seizures, which are a rare side effect to the treatment, I began the slow process of recovery. I felt very blessed that my blood counts began to climb, and eventually leveled out around normal and stayed there ever since. It was seven years after my treatment when my doctor mentioned "complete remission" to me. I remember leaving the clinic in a daze. I was having one of those moments - I felt lucky, I felt…
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 thinking and going. Mechanical comprehensions came quite naturally to me. When I got into high school I
Ron Duncan, Texas Walk Committee
I last gave blood in December 2004. When I went again in March 2005, I was informed that I couldn't give and actually really needed a transfusion. Eventually I was diagnosed with pure red cell aplasia, PRCA, a very rare condition where I don't make red blood cells. I struggled with transfusions and various medications for about three years. In April 2008, I found Dr. Maciejewski at the Cleveland Clinic and a doctor at the local medical school here in Dallas. They added an additional medication to the mix. I have been steadily improving during that time and reached normal hemoglobin levels…
Jim Westmoreland’s Path to a Clinical Trial
James Westmoreland, age 78, of Cookeville, Tennessee, is a retired Associate Vice President for Information Technology Services from Tennessee Technological University. Here, he recounts his story of how his decision to attend a local blood drive eventually led to his participation in Phase 1 of a clinical trial study at the MD Anderson Cancer Center in Houston, Texas. How did you first learn about a clinical trial? Finding out I had a problem happened in an interesting way. I belong to a Kiwanis club and had donated blood off and on, but not on a regular basis. In January 2008, a fellow
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 nursing – a degree for which she is inspired not only by her own experiences, but also the…
"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 treatment was blood transfusions. After a month, I was discharged from the hospital but still needed to…
Heather Putney’s Trials (and Travels) with Aplastic Anemia
There is no shortage of milestones when you are healing following a bone marrow transplant. You have the inevitable counting of days; day 21: being discharged from the hospital; day 90: having fresh produce; day 142: spending the start of Thanksgiving by jogging a 5K, day 300: biking 50 miles with a custom BMT survivor jersey to raise awareness for marrow donation; day 365: my new first birthday and a goodbye to precautions and meds; day 380: returning to work as a health care provider rather than patient. You also have mirrors. I remember the mirror in my hospital room bathroom, which I
Ashley Oakes – Blessed to Have Her Son, Her Family, and Her Life
It has been two-and-a-half years since being diagnosed with aplastic anemia. In September 2010, my husband, Scott, and I moved home to Vancouver, British Columbia from Calgary, Alberta where we had been living for the previous three years. I was six months pregnant and so excited to be going back to the city where all our family lived to share this wonderful time with them. We moved into a little house a few blocks from my mom and settled in to await the arrival of our little one. A few weeks after we moved, it was Canadian Thanksgiving and we had my whole family over for a feast. Everyone…