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.
A Mother's Message of Courage: Marie-Eve Shares Milan's Story
My name is Marie-Eve. I’m the mother of 3 boys, Milan (17), Nando (14), and Kirill (12). In early 2021, I’d been noticing marks on my oldest son’s body — undeniably and inexplicably large bruises — as big as full moons. My mind would spin in a million different directions, trying to convince myself nothing was amiss. Milan kept telling me he was fine. “I’m okay, mom. Stop worrying.” Then, one morning, he left for the hockey rink, sopping up blood from his nose and gums, for no apparent reason. It was March 11, 2021. We didn’t know it yet, but that day would mark a turning point in his life…
Aplastic Anemia Taught me to Nourish my Body and my Spirit
In Sept 2021, I had my stillborn son, Nolan. My blood count levels at that time were normal (250 platelets, Hemoglobin 10, good neutrophils). From September to April, I began supplements (not under the direction of a physician), increased my physical activity massively (including running long distances), and began eating healthier. I also drank more. In April 2022, I began having menstrual cycle changes, vision changes, increased palpitations, and hearing my heartbeat in my ear. The heartbeat made me go to the hospital---its intensity increased and was unbearable, intolerable. My husband
David's Journey - Grandfather Responds to Treatment for Aplastic Anemia
Most of my working life was associated with the printing industry. I was apprenticed to printing way back in 1962. I then worked as a printer and later as a teacher in vocational education at the School of Printing and Graphic Arts in Sydney, Australia. Over a period of forty odd years, I worked in close contact with a large variety of hydrocarbon-based solvents, a known cause of bone marrow failure conditions. In June 2004 at the age of 58, I took a voluntary redundancy. Eighteen months late, I was diagnosed with what at the time was thought to be aplastic anemia. In 2006 I was working on…
Aplastic Anemia, Two Transplants, and Medical School: Jenny's Story
Two transplants later, Jenny is off to medical school! An athlete since preschool, Jenny couldn’t understand the fatigue she’d been having. Only 10 minutes into a soccer game in high school, she had to stop. On an open-gym morning, she felt so horrible she passed out while she was walking to her car to drive home. When Jenny’s dad came to get her, he took her directly to the pediatrician. There, the blood counts showed a red blood cell level of only 4.5, and her platelets were extremely low as well. Before she could understand what was happening, her parents drove her to the emergency
"Sounds like a Fable" - Kami's Remarkable Journey through Aplastic Anemia
To her recent friends, her time fighting aplastic anemia “sounds like a fable,” Kami says. Yet the disease, diagnosed in her freshman year at university, nearly killed her. Like many patients, Kami’s first symptoms were fatigue and bruising. Then her menstrual cycle was so heavy that she says she hemorrhaged, waking up covered in blood. She passed out, so she accelerated her lab appointment. There she discovered her platelets were extremely depleted and her hemoglobin count was only 8. Sent to the community hospital in her remote area, the doctors just scared her. She was stuck in an…
Being Tired Isn't the Whole Story: Sarah's Post-Transplant Life
Sarah was diagnosed with Severe Aplastic Anemia in fall of 2015. Shortly after, she began antibody treatment at the NIH. When that did not work, she proceeded to bone marrow transplant in July of 2016. It has been over 5 years since her transplant. In her own words: The word fatigue describes an exhaustion so severe it can only be medical. No one just randomly says, “I didn’t sleep well last night, I’m so fatigued.” It has to be an ongoing state, something that seeps into your bones, to really be fatigue. It also sounds vaguely exotic, because it comes basically right from the French…
"You CAN beat this!" Jody Encourages other Parents with his Daughter's Story of Aplastic Anemia
Before AnnaLeigh got sick, she was a happy, energetic and healthy 4 year old with a huge imagination. Then she got sick. Severe Aplastic Anemia. It only took about 2 days to diagnose what was wrong with her, but that was just the beginning. The first form of treatment was H-ATG with cyclosporine, to which she didn’t respond well to at all. It actually caused serum sickness and ended up being in the hospital for 250 days the first year. Her day-to-day life went from being a playful energetic little girl to laying in hospital beds, having leg cramps, mood swings, plus she couldn’t go anywhere…
Surfer grounded by PNH Treatment but Thriving!
I was diagnosed with PNH fifteen years ago, at the age of 51. This is my story. I grew up on the West Side of Los Angeles. Raised by a single parent, my mother was a strong woman of faith. My father, the eldest of twelve, died of a heart attack when I was about nine months old. Four of his six brothers, and a couple of my cousins died at an early age. My mother always said, “those Harness men have bad blood.” Little did I know what she meant at the time. Aside from the scholastic team sports growing up, I was an avid surfer, and loved skiing, mountain biking, and golf. Typical California…
Fighting for a Transplant : Stefania conquers Aplastic Anemia and PNH ~ Stefania demuestra su VERDADERA fuerza
Hi! My name is Stefania, I am 31 years old, and I am from Ecuador. My life changed in July 2018 when I was diagnosed with very severe aplastic anemia. I had symptoms for 5 months but I ignored them due to my schedule --- I worked two jobs and I was finishing university. One day I decided to have a CBC (Complete Blood Count), but I was surprised when they called me to go to the hospital emergency room. My general doctor (who is an internist) immediately called the person who became my hematologist. He did a biopsy on me that day, going to the laboratory himself and returning with these words…
Update on Alayna: Loving Kindergarten, but Mom still worries
Alayna is doing all the normal activities for a child her age. Learning to read, making many friends, and taking gymnastics are parts of ordinary life for kindergarteners. She’s looking forward to soccer and more sports when pandemic life eases. Few signs remain that she battled aplastic anemia two years ago. Yet Alayna’s mom still worries. She asks, “Where did that bruise come from?” each time she notices even one small bruise. Parents of bone marrow failure patients understand this worry; unexplained bruising and fatigue were Alayna’s first symptoms of aplastic anemia. (Read her first…