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.
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...
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...
John Vasquez, Part 2
Updates from John and Isabella!
Part 1
In late August 2017, AAMDSIF paid a visit to NIH patient John Vasquez and his sister/caregiver Isabella, several weeks after his stem cell transplant for severe aplastic anemia. Here's what each had to say about what they're doing and how they're feeling. If all goes well, they will be heading back home to San Antonio by February of next year. We’ll be updating their story here each month!
John Vasquez
Stem cell transplant patient
How are you feeling now, about...
Emma's Story, Part 2
As Patient Advocate, Emma Makes New Friends
When Emma was still being seen at the NIH twice a week, we were talking with her physician’s assistant about her t-shirt fundraiser and her Facebook group. After hearing what Emma was doing with these activities, they asked her to be their new pediatric patient advocate, helping newer pediatric patients with advice on how to cope with treatments. This seemed to be another way we could help.
Within a few weeks there was a new patient and we were asked to visit with the family on site at NIH....