Inspirational Stories

I was diagnosed with refractory anemia with ring sideroblasts (RARS), a type of myelodysplastic syndrome (MDS) in 1996. The prognosis was two to five years expected. I’ve had the same prognosis (per bone marrow biopsy) four more times since, last time in 2023. GeneTrails® testing says I am getting worse and so does generally lowering hemoglobin and other blood numbers, and abilities, though part of the latter is age-related, a reality I never thought I would experience! My survival and continued functioning continue to surprise all, including my hematologist. I am also heterozygous hemochromatosis (HH), an "ironic" co-disease for someone who is so anemic. This likely caused the death of my sister at 68 (most probably homozygous). I am also quite immunocompromised. Treatment? Twenty-one years of weekly (as of October 2024) Procrit® for the MDS, and regular then infrequent phlebotomy for the hemochromatosis for most of those years until the last few.

I am a person of strong Christian faith, and after the initial shock of the first diagnosis, I simply got on with getting on with my life, even marrying my much younger bride two months after the initial diagnosis, for which she was present. We went ahead with our plans when she would not hear of my suggestion to call it off because of the diagnosis.

Faith and trust in God are my first reasons for my positive attitude and well-being, my bride ― now of almost 28 years ― is most clearly the earthly reason, one He clearly put in my life to make that so. IMHO, attitude is 80% of dealing with life and to some extent even actual survival.