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. 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.

“My immediate concern was telling my mother and my niece Nicole, the daughter of my late sister. Watching her mother deteriorate traumatised her and I did not want her to go through that a second time, especially because we have an amazing relationship. They handled the news well. My mum was like,”Usiambie watu, (don’t tell anyone).” I think she thought that if word got out, I would never get married, and this her biggest fear. But being single at 41 does not give me sleepless nights. I will marry the one who treats me like I deserve, or remain single.

“In Sweden, I have resources at my disposal. My neurologist is the top ataxia expert in Europe. Many white people have it and they tell you how to manage it, through diet, exercise, vitamin supplements and physiotherapy. I am currently on a new drug that reduces the ataxic symptoms. There is no way I would have been diagnosed if I was in Kenya. No one knows what this is. Even if I saw a neurologist they would require a helicopter as a deposit to run tests in a fancy hospital, and that’s even before we go to the genetic blood test that costs half a million. But the biggest problem in Kenya is ignorance and stigma. Ataxia is worsened by many factors like stress. For my relatives in Kenya who have ataxia, their symptoms have worsened because of how people mishandle them. And yet all they want is a visit and a conversation without offering unsolicited solutions.

“A few weeks ago my friends from high school raised money that went to two afflicted families in Nairobi. They bought a walker for my cousin Mercy and went to visit her family.  I tried to raise money to buy them vitamin supplements unsuccessfully. In the meantime, I ensure I watch my words when talking to anyone and try to use words that build and encourage. Most people don’t and are especially callous to people going through ‘difficult’ situations. People have said hurtful things to me since the diagnosis. A friend who was diagnosed with cancer had people ask her ‘Will your husband remarry after you pass away?’ My rule is that your words should uplift the other person because they require your sensitivity and support.

“Finally the diagnosis exposed my real friends. When you are healthy you can have people who you know are not good for your spirit. This has not been possible since February.  My circle is even smaller now. My real friends call me all the time. Our conversations are not dark and ominous, but are surprisingly funny and entertaining; we discuss how I am feeling for a minute, then men behaving badly and so on. These conversations inject normalcy into my life, and keep me hopeful about my future.”