TALES OF COURAGE: I live with a rare, genetic disease
My father had ataxia. My sister got it and died from ataxia complications in 2011. PHOTO| FILE| NATION MEDIA GROUP
What you need to know:
Nyakarima King, 41, lives in Sweden where she found out that she is displaying the symptoms of a hereditary, degenerative disease that is rarely diagnosed and totally misunderstood in Kenya.
“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.
