"It wasn’t too many years after my diagnosis that I began to realize what a gift this really was. I’d had an opportunity at an early age to completely reassess my priorities and truly live my life the way I wanted to, the way we all should."
Patient Story: Julie
I was diagnosed with Essential Thrombocythemia in 1987 at the age of 30 after experiencing an episode of alexia (word blindness). I had noticed one night at dinner that the label on the ketchup bottle appeared to be total gibberish. My vision was perfectly clear. The shapes just had no meaning. It was as if I’d never learned to read. By the time I told my fiancé about it and we had discussed what to do I had begun to recover. Within a half hour I was back to normal.
Luckily I was enrolled in an ophthalmic technician training program at Georgetown University at the time and was referred immediately by one of my instructors to some excellent doctors for evaluation. Within a short time I had a diagnosis of ET and was asked to return for labs weekly to monitor any progression of the disease. I immediately went to the campus medical library and read all the limited sources available on the subject of MPN’s. Most were outdated information stating frightening things such as an average life expectancy after diagnosis of 10 years! I was a young mother of 2 small children and this was a terrifying prospect. (I later found out that this statistic was true back in the day when CBC’s were rarely done routinely and the patients were generally well advanced in the disease, having already suffered strokes and other major events before being diagnosed.)
For the next few months my platelet counts remained stable at around 670,000 and, being a complete needle phobic I convinced myself that if I just continued on the prescribed baby aspirin daily all would be well and I wouldn’t have return to the doctor or get stuck any more, near total denial.
It wasn’t until nine years later when I began having constant visual disturbances (scintillating scotoma) that I sought out a doctor for follow-up. I saw a wonderful hematologist, Robert Dobrzynski, in Alexandria, Virginia who had an office near my work. The labs showed that I now had a platelet count over one million. Dr. D was very compassionate as he explained the results, answered all my questions, discussed treatment options and inquired about my support network at home. We decided that I would start on Hydrea and, except for one adjustment early on, I remain on this same dosage nearly 10 years later with platelet counts consistently in the mid to high 300,000’s.
At around the time I found Dr. Dobrzynski I also discovered the MPD Foundation (now MPN Research Foundation) and an online support group that they linked to. At the time that I was initially diagnosed, because this is such a rare disease, there were no preprinted patient brochures to hand out. I was given very little information and felt extremely helpless and vulnerable, at times actually waking up in the middle of the night in a panic. After finding the MPN Research Foundation and the online group I learned all that I could and, in time, felt a sense of control and security returning. Knowledge definitely was power in this case.
It’s hard to believe that it’s now been 24 years since my initial diagnosis. I raised my two sons and two step-sons, worked full time and was able to keep the house, take a few clay classes and enjoy socializing with my friends regularly. I’m now retired from my 20 year career in ophthalmology and am successfully pursuing my dream of being a full time potter. It wasn’t too many years after my diagnosis that I began to realize what a gift this really was. I’d had an opportunity at an early age to completely reassess my priorities and truly live my life the way I wanted to, the way we all should. Blissfully ignoring my own mortality was no longer an option and that was a very good thing. Other than a slightly sensitive stomach from the Hydrea and a few bone aches that I can usually ignore the Essential Thrombocythemia has had very little negative impact on my life, but much positive.
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.