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.

Mark

Mark lives symptom-free with MDS, but it's still "like an albatross"

Mark had no symptoms common to bone marrow failure patients. Not one. But an MRI for back pain revealed some unusual markers. A bone scan and blood work still didn’t reveal an explanation. Thankfully, his internal medicine physician ordered a bone marrow biopsy. After waiting and waiting for the results, Mark received the diagnosis: Myelodysplastic Syndromes with 5q deletion. Later testing showed the JAK2 mutation, which he found even more alarming. Mark remembers the call from his...

Samuel Meidinger

2019 update! My Son, the Athlete and Survivor - Sam Thrives Years after Transplant

Following 7 ½ years in the wait and watch mode with Aplastic Anemia, it was August of 2016, that a bleeding hangnail sounded the alarms. By October 2019, my son and I were making weekly trips to his hematologist’s office, 5 hours from our home, for blood and platelet transfusions. The weekly transfusions went on for 3 months. Sam was a sophomore in high school and missed 1-3 days of school each week for travel and treatment. Meanwhile, we were anxiously awaiting word on the work up results...

Johnnie Burford

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...

Derek Fakehany

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...

Karen Woys

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...

Stacy Bravo

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...

Stacy Bravo

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...

Barry Parnas

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...

Precious Mathabatha

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...

Sara Scotti

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...

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Stories of Hope