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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.

Drew Daniels

Pediatric Aplastic Anemia to Coast Guard Officer: Drew Daniels

My name is Drew Daniels, and as a child I suffered from Aplastic Anemia. When I was 8, I remember my parents finding bruising on me, but initially thinking it was from just being an active child. I have pretty spotty memories of most of the treatment, my mom wrote an article for AAMDSIF 6 or 7 years ago from the caregiver perspective which highlights my actual treatment much more accurately than I remember. I finished treatment when I was 10, but unfortunately most of my early memories are of...

Jane Biehl, Ph.D.

MY 12-YEAR BATTLE WITH MDS - By Jane Biehl PhD

I had an article published in 2017 by AAMDSIF and was asked to update everyone.  I will briefly reiterate the first part of my journey and then move forward!      I was originally diagnosed in 2010 with Myelodysplastic Syndrome by an insensitive oncologist, who told me that I had this disease and the average life span for this type was 104 months. I had not even asked how long I would live. She was devoid of emotion and nasty.   The room spun wildly as I grasped my friend’s hand. I couldn’t...

Jocelyn Boyer

“Everything is going to be okay:” Jocelyn’s Story of Aplastic Anemia, PNH, and Survivorship

Before diagnosis, Jocelyn’s life was normal, predictable. She was thriving her senior year in college, studying Public Relations. In 2008, she was working, volunteering, attending classes---all the normal activities for a 20-year-old.  But one day that changed. Extreme fatigue set in, making it difficult to walk a single flight of stairs. At first, she dismissed the fatigue to her rigorous schedule.  One Friday evening, the symptoms intensified. Jocelyn went to a local store’s grand opening...

Veronica Ruiz

How a Delay in Treatment nearly Cost her Life - Veronica's Story

  Veronica learned that delaying treatment was not a good idea. That delay nearly ended her life. In 2018, Veronica was a busy mom, working full time, leaving the house at 5:30 a.m., returning at 5:30 p.m. She stayed healthy by working and staying active. She is a busy mom of two young children, and all the normal activities of modern life. One day, she thought she caught a bad flu, so she stayed home all week, unusual for her. When she returned to work the following Monday, she was exhausted...

Ashley Numbers

Ashley and Alayna: A Mother's Story

September 16 through December 20 will stand out in Ashley’s mind. Forever. These are the days she spent in the hospital with her feisty three-year-old, Alayna, for conditioning and bone marrow transplant. The summer of 2019 was already big with a wedding to plan.  The toddler and her baby brother were enjoying everything that small ones do, including riding dirt bikes with Daddy. When an unusual rash showed up, Dad took her to the pediatrician’s office.  Although the physician who saw Alayna...

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...
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