Patient Stories

Ashley Camara

My story begins a few years back…in Mérida, Yucatán, México where my brother and I were born and raised. My brother and I were the type of kids that would rarely get sick.

We were raised to be very independent, responsible, caring, hardworking people that loved spending time with friends and family and we shared a passion for helping others.

Brian Anderson

My story begins in after a routine, annual check-up with my doctor. I was 49 years young. Overall, my exam was uneventful, but a few days after my examination I received a call from the doctor’s office asking me to return for a second blood draw.

I really wasn’t concerned until my doctor said he couldn’t explain why my counts, particularly for my platelets and white blood cells, were so low. The anxiety began to climb when he referred me to a hematologist/oncologist. Healthy people don’t need to go there, do they?

Bambi Fontana

I don’t feel my story is any different from anyone else’s except for the fact that I was diagnosed at a much younger age. It all started during my honeymoon… I got married in 2014, and my husband and I went on a wonderful two-week honeymoon vacation in Belize. We planned the trip to fit our lifestyle: active, adventurous and daring, with some relaxation at the end. We stayed in the jungle and explored Mayan ruins, caves, and trekked throughout the country. I noticed feeling out of breath and thought to myself how out of shape I’d gotten since completing a half-marathon just two months prior, and a Tough Mudder race the fall before. I remember telling myself that I...

Ron Cook

My battle with MDS began when I was diagnosed in the summer of 2011. In January 2012, I began to receive infusions of Vidaza seven times each month. In August of 2015, I wrote an article about my experience with the disease and its treatment. The article was published by the MDS Foundation in the Fall 2015 issue of The MDS News. This is a brief update on my fight against the disease. My treatments with Vidaza continued until August 2016, when they were no longer effective. I received 414 infusions over the course of those treatments. The treatments had permitted me to continue most of my usual activities. In late 2015, I had cataract surgery on both eyes and,...

Shirley Bulloch

Survivor! Advocate! Fighter! Determined! Researcher! Positive! These words describe me after my 16 year battle to survive MDS. I recorded everything in a journal and called it “Myelodysplasia – My Journey: Letters to a Friend”. If I had started the journal today, it would be entitled, “Myelodysplasia – What a Trip”. I was referred to a hematologist in late May of 2000 to determine the cause of my extreme fatigue and dizziness. I had been treated with B12 injections for years for anemia, but the lab results indicated a problem with my hemoglobin. On June 1, 2000, Dr. Yogesh Gandhi performed a bone marrow biopsy. One week later, he called to inform me that I had myelodysplastic syndromes refractory anemia...

John Kenison

I spent a couple of years watching my blood counts go up and down and my platelet count decreasing. It was June 2017 when I was diagnosed with MDS by Dr. Ali at the James Carey Cancer Center in Hannibal, MO. We made a trip to MD Anderson Medical Center in Houston, TX for a second opinion. They agreed on the diagnosis, and the treatment. My wife and I discussed the options we had, and I decided one good year was better than 2 or maybe 3 years with the treatment. I discussed this with each of my five children and received mixed reactions. I asked them to prepare the grandchildren in their own way, when they thought the timing...