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.
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 later l was diagnosed with
aplastic anemia
aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh…
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
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…
I Was Alone With MDS Until I Connected With Others on Social Media
I sat quietly in the
oncologist
oncologist:
(on-KAH-luh-jist) A doctor who specializes in the treatment and prevention of cancer.
’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…
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
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…
.
He sought local treatment and was started on…
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
bone marrow:
The soft, spongy tissue inside most bones. Blood cells are formed in the 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…
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
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…
. Here's what each had to say about what they're doing and how they're feeling. If all…
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. The little boy, Isaiah, was struggling with the breathing treatments he needed and Emma was asked to…
I'm Like You: Barry Gore
As a young man, Barry Gore was a top-40 celebrity disc jockey, complete with an adoring fan club in the Greater Boston area. But like most first jobs, it lost its luster and he settled into sales and marketing while getting his MBA.
He became the owner of a prosperous machine manufacturing business that his son now runs. But when he was still in his fifties, a family history of heart disease finally caught up with him. Barry’s internist directed him to a cardiologist, suspicious that his complaint of chest pain was more than acid reflux. He was right, and Barry underwent triple-bypass…
A Mother and Daughter Awareness-Building Team Get to Work
“Emma was active in raising awareness for bone marrow failure even before her arrival at NIH.” – Lydia Seiders
I knew from prior experience with advocacy for other Illnesses, that “t-shirt advocacy” really works – they are great conversation starters. After I had read and re-read AAMDSIF’s patient guide, I felt ready to begin advocacy for
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…
My Encounter with Aplastic Anemia
In 2007, when I was 25 years old, I started to get winded going up a flight of stairs. I also began having two hour long nosebleeds, and I knew something was wrong. I had my bloodwork checked and shortly after my doctor told me to go to the hospital right away because my blood counts were extremely low. I had no idea what that meant at the time, and wasn’t overly alarmed. Two weeks and two different hospitals later, I was diagnosed with something I had never heard of, severe
aplastic anemia
aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone…