A good life but maybe not a long one

I have hereditary amyloidosis. I got it from my dad who died at 74 who got it from his dad who died at 61. Both my grandfather and father were great sportsmen. My grandfather was a horse man and my father was a police officer and sea man. He circumnavigated the Northwest Passage through the Arctic to claim sovereignty for Canada as part of his police career.

My brother was also a sailor and sailed around the world fir 30 years after retiring at a young age. He built his first two sailboats on which he learned to sail in the Pacific Nortwest. My brother died at 72 after sailing the South China Sea, the Med, the South Pacific and the Atlantic and the Caribbean. I watched my father, my uncle, and my brother suffer in the last years of their lives. They could no longer walk or use their once strong bodies any longer and died painful, slow deaths with a total loss of use of their limbs.

I had my first symptoms at 39 but I was busy raising my 3 kids but at 52 could no longer ignore the limiting symptoms that were beginning to rule my world. I was a ski pro for 34 years, a gymnast, and played baseball every year up to two years ago. I’m 64 now. My 3 kids are elite athletes and have not yet been tested. Two of my 3 kids are Olympians and my youngest daughter is a professional figure skater. I was happy that my elder daughter won an Olympic Gold Medal and I was in Russia to watch her win it. I was 27 when my dad died and my middle child is now 27.

For 10 years I tried to do everything I could to try and help my brother but as he had a heart and liver transplant he did not meet the criterion to take part in any treatment. The diagnosis was too late. The damage was done. I was so excited when I read that one clinical trial group was 95% successful in treating non human primates and now the same group has successfully saved 6 humans in a trial. I am keeping my organs and hope to get in that trial so my kids won’t see me die young.

I remember my dad trying to prepare me fir him dying. I didn’t really want to believe it but the disease is a somewhat silent killer. Many with the disease live difficult lives. New mRNA treatments give hope but the treatments have not been available in Canada. I am very fortunate to have found the many websites to whom many like me turn in order to try to find ways to try to live with this disease.

Thank you to all for sharing their stories. There are many heartbreaking stories snd many brave people trying to struggle along living with debilitating symptoms.

A good life but maybe not a long one – Pamela – Canada