A Doonside pensioner has published a book on his struggles with living with an extremely rare disease. Frank Gadd, 69, was diagnosed with centronuclear myopathy (CNM) at the age of 32. Only 250 people worldwide are diagnosed with the disease every year, which affect how the muscles operate. It is caused by an excess of protein in the muscle. “My father had it and it’s generic. I had a normal childhood and teenage years. I was like any other child, but I had a problem with balance and endurance. I watched my dad deteriorate until he died at the age of 72.
I wasn’t aware I had inherited it from him until I was diagnosed.” Unfortunately there is no treatment for CNM, but trials for a possible cure are earmarked for 19 patients by Dynacure, a clinical-stage drug development company based in France.
The bad news is the pandemic has pushed back the start of the trials by a year. Frank was born in Newcastle and moved to Toti 25 years ago to start work at Shell as a plastic technician. He took an early medical pension in 2003 at the age of 53. He has been in a wheelchair permanently for the last three years. “I can’t walk at all anymore, but I can still use my arms, although I’m very weak.”
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His book ‘Living with CNM’ has just been re-released locally through Malherbe Uitgewers in Margate. “It took me about a year to write and another year to get it published. It was released through Amazon at the beginning of the year, but when lockdown happened, they stopped shipping to South Africa, so I approached a local publisher. This is the second book I’ve written – the first ‘The promised Bridge’ was a work of fiction about South Africa, that was published about nine months ago. I knew nothing about writing before I started.” ‘Living with CNM’ is about Frank as a person and how he has coped with life.
The first five chapters are about his father and himself growing up before his diagnosis. Chapter six is a description of the disease. The reason for writing the book is twofold – to create awareness of the disease and hopefully get other people who suffer from it to make contact with him. “I’m a member of the Muscular Dystrophy Foundation of South Africa and as far as I know, I am the only one with CNM in KZN.”
As an avid bowls and golf player, Frank is hopeful that a cure will mean he regains the strength in his muscles and can once again partake in life’s little pleasures. He took up painting in 2003 and is a member of the Upper South Coast Art Association. “The only problem I had with the book was where to stop writing. I ended it with the proposed cure. I made contact with Dynacure and they bought copies of my book when I told them about it. The plan is that if the first trials are successful, then they will do worldwide trials and if there is a cure, I’m first in line.”
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‘Living with CNM’ is available as an e-book or paperback on the Malherbe Uitgewers and Amazon websites, and Reader’s Rest in Seadoone Mall.
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