With The Majority of Her Family Diagnosed, One Girl Won’t Give Up On Her Fight with Ataxia

April 25, 2017

By Judy Njuki

My father had spinocerebellar ataxia. He passed it on to my two sisters who started having symptoms in their twenties. One died in 2011 at age 38. I started to have slight symptoms in January of this year. I guessed it might be ataxia. I found a neurologist in Stockholm doing a research study on SCA 3 and went to see him on February 22nd.

He did a SARA exam as well as a blood test and confirmed I had the disease. I am Kenyan and ataxia supposedly does not occur in Sub Saharan Africa. According to my blood work however, It does. It has killed many members of my Dad’s side of the family and about four are affected as we speak. There is no management of ataxia symptoms in Kenya.

I guess my diagnosis has been relatively okay because I have a lot of help available to me in Sweden in terms of nutrition, exercise, access to physical therapy, access to Dr. Martin Arce; the neurologist who diagnosed me, who is the top ataxia expert in Sweden. I also used to work out a lot three years prior to the diagnosis and that has had a role to play in the delay of the progression of the disease. Having sick relatives in Kenya has made me appreciate my situation even more for they don’t have access to my resources.

My outlook for the future is bright. I have a blog and my friends and I are trying to come up with ways to help my relatives. My family has treated ataxia as a death sentence and done nothing to fight it and I want to go visit them while still relatively strong so they can be inspired and start fighting. Some advice I can give an ataxia patient or any neurological disorder is to view their diagnosis positively. They need to look for the silver lining in whatever dark cloud is over them. To focus on the next 24 hours and not fear and worry about the next 10 years. Tomorrow could be a better day.

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