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.
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 dots (petechiae) in my mouth. My doctor was available at the clinic, so my father took…
From Crisis to Career: Behnoush Babzani Triumphs over Aplastic Anemia
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…
led to her career – Behnoush’s story
At 12-years-old, Behnoush was diagnosed with aplastic
anemia
anemia:
(uh-NEE-mee-uh) A condition in which there is a shortage of red blood cells in the bloodstream. This causes a low red blood cell count…
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 normally.
Braeden says he only realized that something interesting was going on when…
Pediatric Aplastic Anemia to Coast Guard Officer: Drew Daniels
My name is Drew Daniels, and as a child I suffered from
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…
. 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…
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
oncologist:
(on-KAH-luh-jist) A doctor who specializes in the treatment and prevention of cancer.
, 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…
“Everything is going to be okay:” Jocelyn’s Story of Aplastic Anemia, PNH, and Survivorship
Before diagnosis, Jocelyn’s life was normal, predictable. She was thriving her senior year in college, studying Public Relations. In 2008, she was working, volunteering, attending classes---all the normal activities for a 20-year-old.
But one day that changed. Extreme fatigue set in, making it difficult to walk a single flight of stairs. At first, she dismissed the fatigue to her rigorous schedule.
One Friday evening, the symptoms intensified. Jocelyn went to a local store’s grand opening where she became chilled, then dizzy. She fainted. Her then-boyfriend took her home…
How a Delay in Treatment nearly Cost her Life - Veronica's Story
Veronica learned that delaying treatment was not a good idea.
That delay nearly ended her life.
In 2018, Veronica was a busy mom, working full time, leaving the house at 5:30 a.m., returning at 5:30 p.m. She stayed healthy by working and staying active. She is a busy mom of two young children, and all the normal activities of modern life. One day, she thought she caught a bad flu, so she stayed home all week, unusual for her. When she returned to work the following Monday, she was exhausted walking from the car to the office, and to the office to the onsite cafeteria which was five…
Ashley and Alayna: A Mother's Story
September 16 through December 20 will stand out in Ashley’s mind.
Forever.
These are the days she spent in the hospital with her feisty three-year-old, Alayna, for conditioning and
bone marrow transplant
bone marrow transplant:
A bone marrow transplant (BMT) is also called a stem cell transplant (SCT) or hematopoietic stem cell transplant (HSCT).The procedure replaces unhealthy blood-forming stem cells with healthy ones and offers some patients the possibility of a cure. But for many patients, a BMT is not an option due…
.
The summer of 2019 was already big with a wedding to plan…
Mark lives symptom-free with MDS, but it's still "like an albatross"
Mark had no symptoms common to
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 aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be…
patients.
Not one.
But an MRI for back pain revealed some unusual markers. A bone scan and blood work still didn’t reveal an explanation. Thankfully, his internal medicine physician ordered a
bone…
2019 update! My Son, the Athlete and Survivor - Sam Thrives Years after Transplant
Following 7 ½ years in the wait and watch mode 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…
, it was August of 2016, that a bleeding hangnail sounded the alarms. By October 2019, my son and I were making weekly trips to his
hematologist
hematologist:
(hee-muh-TOL-uh-jist) A doctor who…