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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.

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...

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...

John Vasquez

I’m working through aplastic anemia – my son helps me keep focused.

My aplastic anemia diagnosis was delivered on September 15, 2015 when I was 20. I was always quite active but was finding that I was fatigued, sleeping a lot, and then my gums started bleeding. I hoped this would stop, but that didn’t happen. Finally, when I was attending a local football game, one side of my body went numb. I went to North Central Baptist hospital, and when the blood work results came in the doctor said ‘I am amazed that you were able to even walk in here.’ All of my blood...

Donna Adams

My MDS Diagnosis and Progression of Treatment

I am 66 years old. I grew up in Massachusetts and New Hampshire, where most of my family still lives. I have been retired from the federal government for 6 years. My husband Jack and I moved to Pennsylvania from Northern Virginia when we both retired. My husband and I have 3 children and 4 grandkids. Jack's kids reside in Virginia and my son lives in Massachusetts. I was diagnosed with myelodysplastic syndrome (MDS) and essential thrombocytopenia (ET) in July of 2013.  In the summer of 2012, I...
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