Stories of Hope | Aplastic Anemia and MDS International Foundation

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.

Sara Scotti

Sara Squares Off With 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...

Sarah Nesheim

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...

Valerie Diaz

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...

Paige Cranwell

Paige Cranwell: "My Half-Match Miracle"

In May 2017, life was good and I was “living the dream”. I had been working full time for about a year after graduating from the University of Kentucky. I was living in Columbus, Ohio, working for an organization that supports children with childhood cancer and catastrophic disease. Everything was on track for my future. I started to feel sick. At first it seemed like flu-like symptoms of fatigue, racing heartbeat, lack of energy and some bruising that just wouldn’t go away. I drove home to...

Ron Carlsen

Ron Carlsen Beats Early Onset MDS; Grapples with Post-Transplant GVHD

In August 2004, I was 42 and going through the annual checkup routine. I felt fine and had no reason to suspect anything was starting to go wrong. I was called back twice to have more labs done. My doctor wouldn’t speculate on what might be happening, but soon I was referred to a hematologist/oncologist. This is when a bone marrow biopsy was done and it confirmed that I had MDS, with the 5q deletion. There were no real changes in how I was feeling but they stated I currently could expect to...

Bridget Daw

Aplastic Anemia and Treatment-Related Complications Influence Career Choice

In December 1992, I was an 8-year-old, halfway through second grade, when strep throat and a urinary tract infection just wouldn’t go away. A late-night trip to the emergency room revealed dangerously low levels of platelets, which explained this and the severe bruising all over my body and rashes on my joints. My platelets were under 2,000 and I was supposed to have 250,000.  I was sent to Virginia Commonwealth University Medical Center (VCU) in Richmond, Virginia that night and a few days...

Sherry Pratt

Patient Trusts Her Instincts in Finding the Right Treatment

I never thought I would be diagnosed with cancer. I taught exercise classes, walked every day, ate a Mediterranean diet, and paid attention to products I used on my skin.  I became a certified health coach and taught healthy living classes.   But I did get a cancer diagnosis -- a rare blood cancer called MDS (myelodysplastic syndrome). Specifically, it was the Refractory Anemia with Ringed Sideroblasts, (RARS) subtype.  I was scared, mad, confused, and in denial. When I was first diagnosed in...

Jane Biehl, PhD

I Was Alone With MDS Until I Connected With Others on Social Media

I sat quietly in the oncologist’s office. The doctor confirmed that my diagnosis was MDS and calmly stated, “The average survival term for your kind of MDS is 104 months.” I felt the room spin.   I never have been healthy, and suffered from upper respiratory infections all my life. Kidney and bladder infections plagued me all through college, and I have had a severe hearing loss since birth. I had been diagnosed in 1986 with an IGA deficiency, meaning that I had insufficient immunity although...

John Vasquez, Part 1

In Treatment at NIH

Texas native John Vasquez led an active life until he started to experience unusual symptoms in 2015, including an incidence of numbness on one side of his body. The 20-year-old was soon diagnosed with aplastic anemia. He sought local treatment and was started on immunosuppressive therapy, causing him to suffer the full range of side effects – fever, chills, nausea and serum sickness, which includes joint and muscle pain. Rather than wait for his doctors’ next steps, John decided to contact...

Krissy Kobata

Confronting Challenges in Finding Matches for Multiracial Patients

34-year-old Krissy Kobata is a passionate patient and advocate/activist. Diagnosed in 2008 with MDS, she’s the epitome of resilience as she has waited for years to find a matched donor. She has devoted this time to helping other patients by enlarging the Be The Match® bone marrow registry. She’s directed numerous bone marrow drives and fundraisers, bringing thousands of new DNA donors to the national registry. However, her own path to finding a donor has been challenging and frustrating. Her...