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.
Rachel Ancer
South African Girl with PRCA Gets German Match
Our 8 year-old daughter Rachel was admitted to Groote Schuur Hospital in Cape Town, South Africa yesterday, March 6, to prepare for her bone marrow transplant. It is auspicious for us that she was admitted during Bone Marrow Failure Awareness Week.
Two years ago we discovered Rachel has an extremely rare bone marrow failure condition known as pure red cell aplasia (PRCA). Her bone marrow has gone on strike and she’s not making red blood cells. What caused it remains a mystery, which has...
Jane Massey
An Unusual Route to Diagnosis
Although it sounds strange, I am beginning to believe that breast cancer possibly has saved my life. In October 2015, I was diagnosed with stage 2 lobular carcinoma of the breast. My cancer was found during my routine mammogram. I opted for a bi-lateral mastectomy and then had 33 radiation treatments in early 2016. I saw my oncologist every month due to my treatment and she ran blood work every time. My numbers had been a little off for some time prior but nothing too worrisome.
However, my...
Sara Massey
A Daughter's Perspective
My mom is a pharmacist and I currently attend the University of Missouri-Kansas City School of Pharmacy. When she was diagnosed with breast cancer last year, I was shocked and sad but I wasn’t scared. To me, breast cancer was one of the “normal” cancers. I remember the exhausting days and weeks following her surgery and radiation treatments, but we happily got to celebrate her return to health.
After a few short cancer-free months, doctors began to investigate “weird” blood levels. Mom would...
Anna Sobon
I'm Like You: Anna Sobon
19-year-old Anna Sobon had been a typical college sophomore, active and full of plans about making her dreams come true.
When she began to get increasingly tired, she thought it was due to her hectic schedule or maybe some lingering after-effects of her bout with mononucleosis the previous summer. Even as her strength was dwindling, Anna stayed determined to keep up with her daily routines while she waited for her symptoms to simply go away.
It turns out that Anna had aplastic anemia. Her...
Dominique Hughes
SAA Patient Contributes to NIH Research
I was 19 years old when I found out that I had low blood counts. At this time I was just starting college and also working three different jobs. I was having extreme stomach pains and abnormal periods. I went and saw my gynecologist and routine tests showed my low blood counts. I was then sent to the local hematologist who did my very first bone marrow biopsy. When the results came back, he said that he had never seen a biopsy that showed so much inflammation and didn’t know what to do at that...
Tom Coccagna
Doing His Part to Assist MDS Research
The first indication that something was wrong came with a routine blood test. Lots of H's (high) and L's (low) dotted my CBC (complete blood count). My primary care provider said it probably was ‘nothing’, but I might want to follow up with a hematologist just to be sure.
I was thirty-nine, a husband and father of three girls. I was an avid runner who ran 10k races, half marathons and full marathons. I had a healthy diet, didn't drink or smoke. I wasn't supposed to be sick. I thought it was...
Brian Anderson
Anderson Family Pulls Together to Create Awareness for Aplastic Anemia
After Liviya’s diagnosis of severe aplastic anemia, my wife Rebekah and I wanted to contribute to bringing awareness to this potentially fatal disease, doing things that can help find a cure. First, we set up an ongoing annual blood drive now in its sixth year that is facilitated by the American Red Cross.
Apart from what happened to Liviya, I had a particular motivation to become as involved as I could be. I’m connected to the biomedical research field as part of the lab animal industry -- I...
Mary Swift
Battling Aplastic Anemia, Seeking Information
At the age of 3, I became ill with a rare blood disorder. I was bruising easily, and my platelet count was dangerously low. I was diagnosed to have ITP, had my spleen removed, and thought I was cured. However, my disease was either dormant or morphing into something else. My symptoms recurred with pregnancy, and after my second child was born, my disease was never dormant again. In 1993, my wonderful doctor was perplexed - whatever I had looked halfway like aplastic anemia AND halfway like...
Liviya Anderson
Horse ATG Saves Young Equestrian
Aplastic anemia is known to most often strike children between ages 6 and 16, and as fate would have it, Liviya’s troubles became evident right on her sixth birthday. Clearly, this had started earlier but we didn’t know about it. The doctors didn’t know what was wrong with her. One possibility was leukemia, but she was later correctly diagnosed with severe aplastic anemia and had the blood counts to support that classification.
Liviya immediately began receiving blood and platelet transfusions...
Sue Gabriele
My Son's Aplastic Anemia
My son Jamie was a very sick child. He was in full-time daycare at the age of 12 months, so he caught every cold and infection imaginable. He’d be on one antibiotic and then need another due to a secondary infection. He had mono, severe flus and ear, throat and other infections.
When he was 10, we thought he had heart problems because he became winded very easily. We took him to the doctor who referred us to a cardiologist. Jamie was diagnosed as anemic and put on iron pills. He seemed to...