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.
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…
"I Chose Life" - Debra Reflects on Three Years of Challenges with Aplastic Anemia
“Your blood counts are nearly nonexistent,” the doctor said. Before this moment, Debra considered herself to be generally healthy, just tiring easily. She assumed the cause was the big project at work on top of a host of family and volunteer activities, or perhaps issues with her blood pressure. It was autumn of 2017. She decided to checked out at the urgent care thinking they would prescribe some pill and she would be ok. Debra’s EKG was normal, but the blood work showed deficits of all three blood lines (white cells, red cells and platelets). Debra couldn’t understand the significance of
Sandy's Long, Hard, Road
I was diagnosed with Severe Aplastic Anemia on February 1, 2011, just 10 days after being in a car accident and getting staples in my head. This couldn’t have come at a worse time because I was in my final semester at Central Connecticut State University. Before my diagnosis, I noticed a rash all over my legs (which I later learned was Petechia), and weight loss. I lost 17 pounds in 10 days, but I thought it was part of “biggest loser challenge” at work. I went to a walk-in clinic because I had cold symptoms, so the doctor gave me prednisone and a z-pack, but also ordered blook work. The…