The story of Leslie
In my mid-30s I was diagnosed with a rare disease — myotonic dystrophy type 1 — which my mother had been diagnosed with a few years prior but was unaware of it being a hereditary condition. Within two years of her diagnosis she died from cancer.
Since my diagnosis I have learned so much about the disease and wish my mother knew some of the facts. Her second child was born prematurely and died within 3 days. My mother blamed the hospital’s negligence and never knew the infant had the congenital, and more severe, form of the disease.
I feel very fortunate to have a quality-filled life in spite of weakened muscles and other multi-systemic symptoms. I have been able to lead a fairly normal child and young adulthood. Not everyone in my patient community is quite that fortunate and I have spent the last 20 years advocating for others with neuromuscular disease by facilitating support groups and hosting a podcast/blog:Â http://glasshalffull.online/ It is my hope to share positive ways to cope with others living with a chronic health condition.
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