I was diagnosed with an incurable disease a year ago, but I’m determined to find joy

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When Fay Aiyana Grant discovered she had an incurable disease, one of her first thoughts was that she did not want to burden her husband or their daughter.

When I was diagnosed with a rare degenerative neurological disease the day before Christmas Eve last year, my entire perspective around the words “be grateful” changed. There is no cure for my disease, which is called

For me, the disease began with neuropathy that spread quickly in my face, mouth and limbs, along with feelings of dizziness and a chronic cough. It had taken nearly a year to find a diagnosis.

It’s important to feel and process all those gloomy feelings, right? But when do you pick yourself up and find joy again? It took months for me to realize that despite no longer being the woman I had once been physically, I was still me, and I had so much to give. With time came acceptance, and with acceptance cameIt took Grant a year to receive a diagnosis of RFC1/CANVAS Syndrome.

 

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God bless her and her family

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