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.
Marianna De Leon
Severe Aplastic Anemia and PNH Diagnoses Came out of Nowhere - Marianna's Story
As a typical community college student, Mariana was busy. Classes, studying, day trips, all were part of her life. Yet during one shower, she dropped to the floor, suddenly dizzy. A few weeks later she would be out of breath, with unusual bruises on her skin.
At the end of the semester, she fainted in the grocery store while on vacation. Her parents dropped everything to drive the miles in a hurry, returning to an appointment with her family physician. Not yet diagnosed, she went to the first...
Alayna, daughter of Ashley
Update on Miss Alayna!
Alayna was a toddler when she was diagnosed with severe aplastic anemia. The previous story described the journey of diagnosis and treatment with a bone marrow transplant.
Today, Alayna is attending preschool, three days a week. She has had no major “hiccups,” her mom said, after the transplant in September 2019. She’s even doing so well, a year later, that she doesn’t need any more post-transplant biopsies!
When does a mom quit worrying? Alayna’s mom, Ashley, continues to worry, especially...
Joshua Maliczowski
PNH - Traveling with a Rare Disease - Update from Josh
Traveling with a rare disease
Traveling as a rare disease patient starts long before the booking of tickets. It starts in the physician’s office where travel is planned around treatment regimen. My wife and I recommend that rare disease patients work closely with their physicians before planning travel to ensure that the patient is healthy enough to travel. Reviewing travel with a physician is important because changing altitudes, sitting for prolonged periods of time,...
Stacy Bravo
Stacy's Aplastic Anemia Journey Part 3: Disappointing Results from First Treatment
Since treatment in July 2019, I have still been transfusion-dependent, receiving both blood and platelets. I get so short of breath when my blood is low. I really hate this disease. Because I’m still transfusion-dependent, I go back and forth for labs, doctor’s appointments, and transfusions.
In September, I started having different problems. I was not feeling well. I kept feeling my heart beating so hard I could not get up to walk a few steps to my kitchen or to my bathroom. I would get...
Joshua Maliczowski
Undiagnosed for Years, Josh Finally Finds both a Diagnosis and a Treatment!
My diagnosis with Paroxysmal Nocturnal Hemoglobinuria (PNH) was a lot to handle, as is any diagnosis of any kind. I could talk forever in circles about the experience of my diagnosis and how it changed everything for me. For the beginning of my story, I will specifically focus on my medical diagnosis of PNH.
Here are the symptoms I was showing before my diagnosis: I was exhausted, all the time. I could not do any athletic activity without being incredibly shaky for hours after, sometimes...
Mychaela Lovelace
Mychaela Dances Again, Thanks to her Mother's Advocacy
My name is Mychaela Lovelace. I had been a healthy five-year-old child until one day, when I came home, my mother noticed red dots and bruises on my body. Because she worked in the medical field, she was very concerned. She took me to the doctor, but my pediatrician wasn’t on in the office that day. The doctor I didn’t know said that I was just playing too hard and the dots and bruises were just a rash.
Over the next two weeks, the symptoms started to get worse with nosebleeds at night and red...
Behnoush Babzani
From Crisis to Career: Behnoush Babzani Triumphs over Aplastic Anemia
Aplastic Anemia led to her career – Behnoush’s story
At 12-years-old, Behnoush was diagnosed with aplastic anemia. Her therapies were the typical ATG and Cyclosporine, and she responded well.
But when she was a freshman in college, pancake-sized bruises appeared. She attributed the extreme fatigue to normal, active, college life. She was so exhausted she’d fall asleep in her classes, much to her surprise. Behnoush, out of fear of having to deal with these familiar symptoms, ignored and hid...
Braeden Hahn
Community Rallied around Braeden's Family as he Fought Aplastic Anemia --- Now Family "Pays it Forward"
“Hey, Braeden, we need to go.”
Little did 12-year-old Braden understand that he was headed towards hospital admission.
Earlier that day, Braden nearly passed out on the basketball court. He was a happy, athletic child, who excelled at several sports. His mom, Becki, took him for blood work.
Later, Braeden’s parents heard from the doctor’s office: take him to the Emergency Department now. That’s when Braeden’s dad came to pick him up from his friend’s house, where he’d been playing...
Drew Daniels
Pediatric Aplastic Anemia to Coast Guard Officer: Drew Daniels
My name is Drew Daniels, and as a child I suffered from Aplastic Anemia. When I was 8, I remember my parents finding bruising on me, but initially thinking it was from just being an active child. I have pretty spotty memories of most of the treatment, my mom wrote an article for AAMDSIF 6 or 7 years ago from the caregiver perspective which highlights my actual treatment much more accurately than I remember. I finished treatment when I was 10, but unfortunately most of my early memories are of...
Jane Biehl, Ph.D.
MY 12-YEAR BATTLE WITH MDS - By Jane Biehl PhD
I had an article published in 2017 by AAMDSIF and was asked to update everyone. I will briefly reiterate the first part of my journey and then move forward!
I was originally diagnosed in 2010 with Myelodysplastic Syndrome by an insensitive oncologist, who told me that I had this disease and the average life span for this type was 104 months. I had not even asked how long I would live. She was devoid of emotion and nasty. The room spun wildly as I grasped my friend’s hand. I couldn’t...