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.
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…
I'm Like You: Brandi Lewis
Brandi was hooked on acting from the time she was three and played a munchkin in the Wizard of Oz. She eventually sidelined her first love to study political science at the University of Northern Alabama.
In 2011, she made history there as the first black Miss UNA. Her next coveted role was as a college intern on Capitol Hill in Washington, D.C. But by far, the hardest part she ever had to undertake was that of a
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are…
Alaskan Goes Home for Treatment and a Fresh Start
I tell people I'm unique - almost one of a kind. I am 40 years old and have recently been diagnosed with a rare type of MDS having an unusual deletion 12q cytogenetic abnormality, known MDS 12q (-), or MDS 12q minus. I was diagnosed in February of 2015 at age 38, however my health struggles began several years before that. I had been living in Alaska for nearly twenty-five years. In 2008, I was diagnosed with lymphocytic colitis (also a rare disease for someone of my age). I was referred to a
hematologist
hematologist:
(hee-muh-TOL-uh-jist) A doctor who specializes in treating…
I'm Like You: Tyler Andrews
Tyler Andrews has been passionate about running for most of his life. The 26-year-old turned it into his profession and has competed all over the world.
But the biggest competition he ever faced was at the tender age of six, when he was confronted 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…
Gouldsmith Family Pulls Together for Gabby
In June 2011, my daughter Gabby was seven, and we had just relocated from Las Vegas to Reno, Nevada. She seemed tired and had alarming bruises on her shins. She also had a persistent ear infection and I noticed red dots (petechiae) on her shoulders.
I’m a nurse and work for a pediatrician, so seeing all this in a short time set off alarms for me. I took Gabby to Dr. Robin White's pediatric practice (where I work) for further examination. Dr. White became very involved in Gabby's care and even made house calls for her instead of bringing her into the office, risking of further infection.…
I'm Like You: Vincent Rusak
Vincent Rusak of New Kensington, PA, traveled extensively during his 26-year career as an expert electronic service technician. For 15 of those years, he was also a regular blood donor in his community.
His father’s quadruple bypass surgery, as well as a deep compassion for his fellow man, were Vince's motivation for contributing to his local blood banks every six to nine months. Little did he know that this selfless habit would someday save his life.
One day 13 years ago, Vince went to give blood as usual. “But when they pricked my finger and put the blood drop in that liquid, it was…
I'm Like You: Judi Wilkinson
Judi Wilkinson of Ormond Beach, Florida, has worked as a mortgage underwriter, 911 operator and auto racing team manager. She was accustomed to handling tough situations, as well as emergencies.
But when the strong and active mother of two received her
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……
“Don’t worry, I’m not going anywhere.”
On April 15, 2007, my husband Jeff, age 39, tucked our two and three year old boys into bed. He suddenly yelled down to me in a concerned voice, “Honey, my vision is slightly distorted, and it must be a migraine. I’m going to lay down for a bit.”
I was not extremely concerned since Jeff had gotten migraines in the past. But the next day, the other eye was also adversely affected in the same way. We sent the boys to day care, and went to the eye doctor, who immediately referred Jeff to a retinal specialist. As my concern grew, I still could never have predicted the severity of what was…
I'm Like You: Briana Donis
Homecoming queen and top student Briana Donis always wanted to go to the University of Texas at Austin.
“I was having a pretty awesome year. I was very well known at school and I had a boyfriend.” She had just been accepted at the school of her choice when she noticed how really tired she was all the time. And then the bleeding started.
“When I would cut myself, like it would be just a little paper cut, I would fill up a napkin with blood. I thought it was really weird.”
It was really severe
aplastic anemia
aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and…
My Life is Making a Difference
Beginning September 2012, I just wasn’t feeling quite right. I was increasingly fatigued and there were some perplexing bleeding incidents, as well. After many months I experienced partial vision – just little areas of vision that were blank. Internal bleeding in the eyes was causing this, and my eye doctor knew it was serious and even thought it could be leukemia.
Blood tests were done, and when my doctor saw the results he called and told me to go to the emergency room right away. My platelets were almost nonexistent, and the doctors could not believe I actually walked into the emergency…