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.
Barry Gore
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...
Emma's Story, Part 3
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. I knew I could send anyone to their website for any questions I couldn't answer.
Getting started with T-shirts...
Jill Minden
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....
Brandi Lewis
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 patient.
“I have PNH. I was previously diagnosed with...
Shauna McMillan
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...
Tyler Andrews
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. He was in first grade when he was horsing around one day with his older brother and fell down a flight of stairs. It was the luckiest tumble he ever took, leading to the enduring family joke that his brother saved his life by...
Heather Gouldsmith
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...
Vincent Rusak
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...
Judi Wilkinson
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 diagnosis 14 years ago, she was just as stunned as every other bone marrow failure patient. "It scared the daylights out of me."
Judi recalls being in the best shape of her life since high school when, out of the blue, she felt...
Jeff Paccione
“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...