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GNE Myopathy: Why It Is A Bad Dream

Shilpi Bhattacharya says people with GNE Myopathy face multiple challenges -- finding a job, completing education and getting married. And there is no treatment available!

GNE Myopathy: Why It Is A Bad Dream
Shilpi Bhattacharya 36 | Photograph by Jitender Gupta
GNE Myopathy: Why It Is A Bad Dream
outlookindia.com
2019-06-14T11:26:53+05:30

When a rope is continuously rubbed against a stone, the friction wears away the fibres until the rope finally breaks. Think of the rope as muscle and the rubbing as life. As life goes on, my muscles are slowly dying, until one day there will be no muscles left. I have GNE myopathy, a progressive disease that starts in early adulthood and causes loss of skeletal muscle leading to total disability, typically within 10 to 20 years of diagnosis. At present, there is no treatment for it.

Ever since I was diagnosed 10 years ago, I have not known a moment that was carefree, when I did not have some aspect of my disease on my mind. The relentless progression is the most challenging part of GNE myo­pathy. It has taken much effort for me to accept each of the changing bodily avatars brought by this disease. For the most part, I felt ashamed as if the disease made me lesser than others; I found it difficult to discuss or disclose my disease to anyone, ­including close friends and colleagues who were almost like my family. For a long time, I thought of GNE myopathy as a bad dream.

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