Katrina's battle with albinism

Katrina Ebby Photo: Courtesy

My princess was born in Nairobi Women's Hospital. Despite the fact that my husband and I, as well as our first three children are light skinned, I was shocked when they presented her to me. She was very white with yellow hair. My husband who was away in Egypt at the time of her birth, and my eldest daughter Eva had both had visions of us playing with a very light skinned baby during my pregnancy.

 I guess it was God's way of preparing us. I called my father-in-law and told him how the child looked and he responded calmly that she was an albino child and that it was OK. This calmed me down. My husband and I have the albinism gene in our families, but never thought any of our children would pick it up.

The doctors checked her. Except for her very light skin and poor eyesight, she was normal in every other way. She is short sighted, like my husband and I, and has astigmatism. For us, this means instilling in her the instinct to protect herself from the sun by wearing sunscreen and a hat when her hair was shorter, and also a diet heavy in dairy. We have had two incidences where she got severely sun burned.

Having Katrina in our family has been a blessing. She has a mature vocabulary and a photographic memory that describes her world articulately. She knows that she is different but does not let it bog her down. She is central to our decision making as a family. For instance, when we plan a family activity, we need to think about her comfort.

This means beaches are out for us. I have also had to be extra sensitive about her security and even at work, I monitor her movements. I am close to the teachers in her school and realise that albinism is not something that they were taught to deal with in school and so I share with them information that would make teaching her less challenging. After all she does spend her time between home and school. Her eyesight affects her reading and writing so I had to get her a coach.

Katrina changes her eye glasses twice a year. She also has to exercise her eye muscles to improve control of her lovely silver and gold eyes. Her eye muscles shake when she focuses too much on something. In about four years, her father and I have agreed that one of us will donate an eye to her so that she has at least one strong eye. It is something we are both comfortable doing for her.

The stares from people, women especially, who sometimes even follow us around the supermarket, are unnerving. This gets me defensive. In Nigeria, where we have lived for a while, there were more accepting of her. They called her Oyibo – which is what they call Caucasians. In Kenya they wanted her to go to Thika School for the Blind, but my argument was that she is not blind.

I wanted to normalise her life. But I realise that she needs to have more people with albinism in her network, especially children. When I told her that you were coming, she asked if you had white skin too.

Katrina says,

People often ask me why I am white. I say to them that it is because God made me that way. I am beautiful. I am six-years-old and in Standard One. I wear spectacles because I don't see very well from the back of the class, especially when my teacher writes on the whiteboard with a green marker. I like it when she uses red, black or blue markers. My favourite subject is Christian Religious Education, because I learn many stories from the Bible.

 I am also very good with computers. I speak a little French, love swimming and have ridden on an ostrich. I have gone to school in Nigeria and in Kenya. People are nice to me, except one girl in school who takes away my sun-block lotion and tells the teacher lies about me. I use the lotion twice a day in school and try not to forget to apply it. When I do, I have to stand under a tree-shade so that the sun does not burn me. If it does, I get very red with spots all over my skin. When I grow up, I want to be a nurse so that I help people who are sick.

Albinism

Definition: A group of hereditary disorders that are characterised by the reduction or absence of pigmentation/colour in the skin, hair and eyes. It also causes problems with vision.

Symptoms: Lighter skin tone in varying degrees – but in some people the levels of melanin may increase gradually as they age. In Africans and Asians, hair tends to be yellow, brown or reddish. Eye colour varies from blue to brown but may appear translucent in sunlight. Photosensitivity -Vision is always affected.

Prevalence: Globally there are an estimated 17,000 people affected whereas in sub-Saharan Africa, there are about 1 to 5,000 people. All ethnic groups are susceptible.

Causes: Mutation/alteration in one of several genes which interfere with an enzyme called tyrosinae which is responsible for synthesizing melanin from amino acid tyrosine. This can slow or completely stop melanin production. Visual problems result because of melanin's vital role in the development of the retina and the optic nerve pathways from the eye to the brain. It is also hereditary.

Complications:

• Sun-burn and skin cancers

• Significant social issues including:- Bullying in school, ostracization, leading to stress, low self-esteem and isolation.

• Extraneous dangers – in Africa e.g. Tanzania and Burundi, they are murdered because their body parts are sought after by witchdoctors

Management: There is no cure.  Management revolves around minimising symptoms and watching for changes. Parents should watch out for bruising, repeated nose-bleeds and blood in diarrhoea, right eye-care, surgery to control shaking of the muscles – this does not improve eyesight.

It does not worsen with age and children with albinism are able to flourish and achieve the same education and employment levels as those without it. Albinism is NOT CONTAGIOUS.

 

 


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