TALES OF COURAGE: I live with a rare, genetic disease

Source: Daily Nation

By Nyakarima King

“My father had ataxia. My sister got it and died from ataxia complications in 2011. This January, a friend noticed I was walking funny. I have always had slight issues with my balance but this was the first time it was visible to anybody.

“What’s ataxia, I hear you ask? Cerebellar ataxia is a rare genetic disease that affects the part of the brain that affects movement and coordination – the cerebellum. A person’s cells slowly die away year after year and eventually, a person can’t make any movements in their body. The patient looks as if they are drunk because they stagger and their walking is wobbly. Ataxia mainly affects Caucasians; my family is the first outside South Africa to be reported with ataxia. I suspect there are more cases.

“Many of my paternal relatives have it, and because people don’t understand what it is, they think our family has been cursed. Apparently, we did something to bring it to ourselves. They say that my father (a doctor) must have stolen 23 chickens from their neighbour. My relatives in Kenya have it rough. People avoid them, do not visit them, insult them and tell them what they should do to get instantly healed. ‘Eat two bats, sacrifice a goat to the gods and kaboom! your ataxia is gone.’ Being cursed is the easy, go-to-solution that explains ‘different’ phenomena.

“People go on about Kenyans in the diaspora and how annoying we are with our accents and shady jobs that are beneath those who live at home but for me, being diagnosed with ataxia in Sweden has literally saved my life. When I started to show the symptoms I made an appointment with a neurologist in Stockholm to test for it. He conducted a physical examination and took my blood to verify I had it via a genetic blood test that was free for me but costs $5, 000 (Sh519,000) in the US. Then he told me I had ataxia.

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