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.
Soldier faces down Aplastic Anemia in 1980, paving the way for ATG treatment!
Johnnie Burford was deployed in Korea. He was a muscular 195-lb athlete, a proud member of the US Army Second Division. Nothing stopped him from performing his duty. Yet a rapid weight loss of 100 pounds, coupled with unusual bruising, alerted him that something was very wrong. At first, the assigned P.A.’s gave him iron supplements. Eventually, he was sent to the hospital for testing, and to his surprise, he was not allowed to return to his unit. On August 10, 1980, he was diagnosed with aplastic anemia. Within one day, he was flown back to the medical center he chose, the William Beaumont…
Two transplants mean new life for Derek: a story of high-risk MDS, perseverance, and advocacy
Derek was turning 45 and had noticed occasional swelling in his legs. Due to a family history of heart disease, his wife, Amy, was uneasy, noticing this symptom. She encouraged Derek to see his doctor for more thorough testing. At the primary care physician’s office, Derek had a Complete Blood Count. The blood test showed he was anemic, but nothing else unusual. Derek’s family doctor referred him to a hematologist to look into his anemia. At the first appointment, the hematologist noted anemia, but didn’t see anything else of concern at the time. He encouraged Derek to come back in three
High Hopes Fulfilled for MDS Survivor
I was diagnosed with MDS (RAEB-2 - Refractory Anemia with Excess Blasts) in January 2010 at the age of 55. This came after routine blood work and a subsequent bone marrow biopsy revealed dangerously low blood counts and cellular abnormalities. What a terrible shock for both my husband, Michael, and me! I’ve always been incredibly healthy and come from a long line of healthy, long-lived individuals. I didn't feel sick, so how was it possible to have a rare, life-threatening illness? Sure, I was tired and short of breath sometimes, but I assumed it was simply due to being overweight and out…
Stacy's Aplastic Anemia Journey continues
Part 2: Immunotherapy begins! The doctor in San Francisco confirmed that I had aplastic anemia. Treatment would begin with “triple immunotherapy.” I was admitted for four days for the treatment. He told me that if this didn’t work, I’d need to stay in there for four months for a stem cell transplant. My first night of immunotherapy was so bad that I was going into shock. The next few days, it was a little easier but I needed blood and platelets. My body started to reject the platelets, so that worried me! I was fortunate to find one donor, all the way from Sacramento, whose platelets I…
Stacy's Journey through Aplastic Anemia
This new series will follow Stacy as she navigates the world of bone marrow failure disease. We’ll release each new chapter as she shares what she experiences. Watch for announcements and updates! Part 1: Symptoms and diagnosis My name is Stacy Bravo I have been diagnosed with a rare disease. I have Aplastic Anemia. By sharing my story, I’m hoping to make a difference. I want to help others by creating awareness and encouraging everyone to become a donor for blood, platelets, or bone marrow. When our family took a short trip to Morrow Bay and Pismo Beach. I was so exhausted I stayed in the…
MDS-My Story...so Far! By Barry Parnas
MDS - My Story . . . so far Early in 2010, thousands of us had just been laid off and I had decided to start an RN nursing career. I was 47 years old, but in May I was diagnosed with MDS after a routine physical. I had a follow-up appointment with a hematologist oncologist over the summer, and a bone marrow biopsy in August, which was definitive for MDS-RCMD (Refractory cytopenia with multilineage dysplasia). I had a consultation with the bone marrow transplant (BMT) director at Washington University Medical School in St. Louis. He said that I would probably need blood transfusions within 3…
Precious Conquers Aplastic Anemia, a Story from South Africa
As a girl in South Africa, I was healthy and active. I started college at the University of Limpopo, studying Business/Accounting in 2011. The next year, though, I started having unusual symptoms. I felt so exhausted that I had trouble getting out of bed. Then in October I noticed other changes. My skin was pale, and I had bruises all over. Because my skin is light brown, I didn’t make much of it. When I saw my dentist that month, the cleaning took longer than expected. The dentist handed me a solution to rinse my mouth, but my gums continued bleeding. When she noticed the bruises on my…
Sara Faces Down Aplastic Anemia
Aplastic anemia entered my life when I was 20 years old. I was visiting my grandmother in Delaware when I first noticed some of the symptoms. I was feeling fatigued and was getting little pinpoint bruises all over my legs, now knowing it was petechiae. I went to the doctor – no blood work was done at first, but I returned a few weeks later because the fatigue had become extreme. At this time, I was starting to suspect some sort of anemia, where I could barely get up without being out of breath and my therapist pointed out to me I had very pale lips and skin color. This time I asked for…
Young Minnesotan Opens Up About Dual Diagnosis and Emphasizes Emotional Wellness
My Diagnosis In the summer of 2014 I noticed ongoing bruising all over my body. At first, I thought it might have to do with my diet (low iron), but soon I noticed a new kind of mark on my skin, almost having a bulls-eye appearance. By end of summer I knew I had to do something about this. I went to my primary care doctor who ran a CBC (complete blood count). The office called back right away saying all my blood counts were extremely low, which came as quite a shock. I was immediately referred to the Minnesota Oncology Center. At this facility, I also had the first of several bone marrow
Faith and a fully matched sibling help beat back severe aplastic anemia
In October 2017 I was hospitalized for extreme dizziness, vomiting, fatigue, bruising, and shortness of breath. As an active, healthy person, having these symptoms was worrisome. My husband took me to the emergency room, where they performed a series of tests. We waited for my results, and a nurse looked at me and asked if I realized how pale I looked, and neither my husband or I had even noticed. At one point my blood pressure went down to 53/30 because my body was rapidly running out of blood. When the nurses realized this, they rushed me into medium care unit and requested an emergency