Tribute to lady who lived with and suffered from albinism

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ANYANG’ NYONG’O

I want to pay tribute to a beautiful young lady who passed away this week: Agnes Muthakye. Agnes died at the tender age of 51 plus. She would have been 52 next Saturday, February 25, 2012. She died on the eve of Valentine’s Day, February 14 and we remember her with love because she was such a lovely and loving person. She lived with albinism and suffered from it and for it most of her life.

Albinism (from the Latin word albus meaning “white”) is a congenital disorder characterised by the complete or partial absence of pigment in the skin, hair and eyes due to absence or defect of an enzyme involved in the production of melanin.

Albinism results from inheritance of recessive gene alleles and is known to affect all vertebrates, including human beings. While an organism with complete absence of melanin is called an albino, an organism with only a diminished amount of melanin is described as albinoid. Agnes was born without melanin as were and are many of her colleagues in the Albinism Society of Kenya today.

Albinism is associated with a number of vision defects and skin problems, including cancer of the skin. Lack of skin pigmentation makes for more susceptibility to sunburn and skin cancers. And that is why people with albinism have to protect themselves against direct exposure to the sun by wearing hats and applying sun block lotion to prevent sunburn and skin cancer.

Agnes was born and grew up in poverty. She was too poor to afford those things that people with albinism need to live decently, including food and shelter. But Agnes was a proud and confident young lady who never indulged in self pity. Instead she used all her creative powers to make ciondos (baskets) and to knit sweaters so as to earn a living in order to bring up her family of seven children happily and cheerfully.

Right from childhood Agnes suffered discrimination and marginalisation for being a person with albinism. In her family where she was the first among other siblings with albinism, her father never gave her the love and attention she needed. Some of her siblings had normal pigmentation and he seemed to favour them. If anything, the father initially inflicted injury to one of her eyes when he beat her up ruthlessly for reasons Agnes could never understand at that tender age.

She was, however, able to complete her primary education which she attributes to her albinism, unlike her sisters with normal pigmentation who got married very early.
Agnes became proficient in both English and Kiswahili. Nonetheless life in school was not always rosy. Teachers were insensitive to her needs and she was derogatively referred to as a muzungu, meaning a white person.

She met and got married to an older widower, John Kabiru Kariuki with whom they had seven children. Marriage came with its challenges as well, as she continued to struggle for her large family. In 2003 she lost her second eye and hence became totally blind. From now on she would have to look after her family and seek help to get about in life. But Agnes was never discouraged; she soldiered on triumphantly one day at a time.

I first met Agnes through my daughter, Lupita who was doing a documentary film on albinism in Kenya, in 2006: what became known as In My Genes which has now been shown across the globe. Lupita discovered how cruel our society was to this small group of Kenyans who, for no fault of their own, are born with albinism.

The film features Agnes as the main character, giving us a glimpse of the daily life of a person with albinism in Kenya. The story is also told through the lenses of seven other Kenyans living with albinism such as Isaac Mwaura and Alex Munyere, National co-ordinator and Chairman of Albinism Society of Kenya, respectively.

In My Genes has immortalised Agnes and we shall never forget this young lady who was always so clear minded, so conscious of the need to live life daily as it comes, and the need to ensure that one always does one’s best in whatever one does.

With the passing on of Agnes we must all focus on the needs of people living with albinism and the response expected from our health care system, particularly palliative care when they get overcome by cancer.

Very often it is the family which lives to remember the negligence of a health facility when their loved one is passing on. That extra attention and concern is highly valuable to the living. That compassion makes for good memories later. These are values and practices that need to sink deep into our medical professionals. The phone calls I got from my wife, Dorothy as they were looking after Agnes towards her sunset were rather disturbing.

Agnes was in extreme pain when she lay in bed at Kenyatta National Hospital during her last days. I wish she passed on in less pain! With access to Universal Health Care through the National Health Insurance Fund which we are working on at the moment I hope access to quality health care will not be the preserve of the well to do.

Let us remember Agnes by the improvements we make to the delivery of health to people living with albinism. The Albinism Society of Kenya and Monica, Agnes’s daughter, can be reached at 0728-384594 for any help a reader wants to give, or simply to express solidarity with the family and the society at this time of celebrating the life of Agnes.

Nyong’o is the Minister for Medical Services

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