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
aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and…
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
hematologist:
(hee-muh-TOL-uh-jist) A doctor who specializes in treating blood diseases and disorders of blood producing organs.
to look into his
anemia
anemia…
High Hopes Fulfilled for MDS Survivor
I was diagnosed with MDS (RAEB-2 -
Refractory
Refractory:
Not responsive to treatment or cure. For example, refractory anemia is a low red blood cell count that doesn't respond to standard treatments.
Anemia
Anemia:
(uh-NEE-mee-uh) A condition in which there is a shortage of red blood cells in the bloodstream. This causes a low red blood cell count. Symptoms of anemia are fatigue and tiredness.
with Excess
Blasts
Blasts:
See Blast Cells.
) in January 2010 at the age of 55. This came after routine blood work and a subsequent
bone marrow biopsy
bone marrow…
Stacy's Aplastic Anemia Journey continues
Part 2: Immunotherapy begins!
The doctor in San Francisco confirmed that I had
aplastic anemia
aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
. 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…
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
Aplastic Anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form.…
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
hematologist:
(hee-muh-TOL-uh-jist) A doctor who specializes in treating blood diseases and disorders of blood producing organs.
oncologist
oncologist:
(on-KAH-luh-jist) A doctor who specializes in the treatment and prevention of cancer.
over the summer, and a
bone marrow biopsy
bone marrow biopsy:
A…
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. …
Sara Faces Down Aplastic Anemia
Aplastic anemia
Aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
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…
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…
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…