I feel healthy and comfortable in my own skin

Renowned lawyer MUMBI NGUGI was born with albinism 49 years ago at a time when not much was known about the condition. In fact, it was widely accepted that she would not live beyond age 40, but today she is a woman to reckon with, both socially and professionally. She spoke to NJOKI CHEGE

I was born in Banana Hill, Kiambu, and growing up as a ‘different’ child was not easy. However, with the love and support of my parents and ten siblings, I managed to rise above the limitations of my condition as a child living with albinism. I also had an older brother who had albinism.

I attended Thimbigua Primary School near my home and my fellow pupils made nasty comments and jokes about my condition. Nevertheless, I excelled in my final KCPE (35 out of 36 points) and was admitted to Ngandu Girls’ High School in Nyeri, where I must say I found one of the most supportive environments ever.

The nuns were understanding and caring towards me, and my fellow students were different from the ones in primary school, as they interacted and socialised with me right from the outset, treating me like a ‘normal’ girl.

I later learnt that just before I reported to the school, the nuns had talked to the girls about "a new girl with a special condition" who would be joining them.

My life may seem like it has been smooth sailing but it has not. It has never been easy especially when a large proportion of society is avoiding you. Nothing breaks my heart more than witnessing the discrimination and stigmatisation people with albinism go through daily.

In fact, finding jobs for people like me is almost impossible because the world is convinced we are intellectually challenged, or a ‘bad omen’, or just objects of curiosity.

When I was growing up, I was always the centre of attention in every crowd I was brave enough to appear in. When I walked into a public place, everything would come to a standstill and I would feel everyone’s eyes tearing me apart. Some voices were loud while others whispered, but they all analysed me, mostly in disparaging terms.

It was really tough socialising at school functions because I attracted too much attention, so I avoided social places and public events as much as possible as it was really uncomfortable, especially when people would come too close to me to check if I was a real mzungu or an African!

To this day, I find it hard to go to crowded social places and I dread being in large crowds. I prefer one-on-one encounters.

Albinism results in poor vision and school for me was difficult, just as it is for many people born with albinism. I had major problems with my vision. I couldn’t see clearly what the teacher wrote on the blackboard and so I had to listen, decipher for myself and write my own notes, or copy from my friends.

Poor eyesight

My mother once took me to Kenyatta National Hospital to seek help for my poor eyesight, but the doctors did not even know that I could be assisted with glasses, at least to protect my eyes from the glare of the sun. It was not until I was in high school that I finally got glasses with photo chromatic lenses.

There was little information around me about albinism so I scoured every little bit of information from reading books, magazines and publications such as Reader’s Digest.

This way, I learned about preventing sunburn through use of sunscreen.

As a child, I suffered a lot from sunburn but no one around me knew about sunscreen, although my father would buy me a certain cream for my skin to heal the sunburn. I didn’t see or use sunscreen until I was about 17 years of age when I discovered it in a supermarket.

As a young girl, the stories I read about albinism indicated people with albinism died young from skin cancer, often before their 40th birthday. I, therefore, lived with the fear that I would die before I turned 40, but that fear is conquered as I’m 49 years old, nine years above my expected date of demise! I feel healthy and comfortable in my own skin, but I am among the lucky few.

People with albinism are more susceptible to skin cancer and I have seen it shorten the lives of many people, which is a pity because skin cancer is easily preventable and treatable. It saddens me whenever I see a person with albinism suffering from cancer, yet it can be prevented easily by using sunscreen, wearing hats, long sleeved clothes, and avoiding long exposure to the sun.

The problem, however, lies in societal perceptions where children born with albinism are shunned, denied education and employment opportunities, and treated as if they don’t exist. What many people don’t realise, including some medical personnel and government officers, is that albinism is not painful, neither is it a disease that will kill you. It simply is a lack of the melanin pigmentation in the skin, hair and eyes, which makes us look different on the outside, but not on the inside.

I am one of the co-founders of the Albinism Foundation of East Africa, which came into being in 2008. The foundation comprises people with albinism, parents of children with albinism and professional friends with an interest in the rights of persons living with albinism. We want to ensure the social acceptance of people with albinism. It is not fair for people with this condition to die unemployed, uneducated, unaccepted, and maimed or killed for witchcraft rituals.

We want to ensure people with albinism get proper education, an opportunity for gainful employment in a safe environment and not as farmers or hawkers in the hot sun. We are also lobbying for proper preventive and curative health care with regard to their skin, and a chance to enjoy all the rights that other Kenyans are entitled to.

Small minority

Sadly, at no time, not even during the 2009 Census, has anybody bothered to find out the number of persons with albinism in Kenya. However, if we take the estimated ratio of one person with albinism to every 5,000 people, there may roughly be about 8,000 people living with albinism in Kenya, which is a small minority. Therefore, it would be easy for the Government to cater for our few needs.

Of these 8,000, only a few know about sunscreens and how it helps prevent skin cancer. In the last couple of years, I know of at least ten people with albinism who have died of skin cancer, which can easily be prevented and treated. Those in the remote villages of many rural parts of Kenya who work under the scorching sun have no idea that they can prevent the lesions on their skin caused by extreme exposure to the sun.

Sunscreen

Even those who know about sunscreen find it unaffordable. A bottle of sunscreen in the market goes for between Sh1,200 and Sh1,600. It costs this much because it is heavily taxed, as sunscreen is regarded a ‘luxury’ item mainly for the expatriate community.

If the Government were to make provision of sunscreen for people with albinism part of its health care system, the problem of skin cancer would be over. While sunscreen of SPF 30-50 (which is what people with albinism need) costs about Sh1,500 in the market, it could go as low as Sh700 or less as part of Government concession.

If a bottle of sunscreen lasts for a month, government investment in sunscreen for about 8,000 persons with albinism would range between Sh25-65 million, which is by far cheaper than treating skin cancer.

I have seen youth below 30 years die of skin cancer, which is really a terrible and wasteful thing. People with albinism, or parents of young children with albinism, come to me for help.

Sometimes I buy sunscreen for young children from my own pocket, or with help from my friends, but most of the time, I am at a loss on what to do for them, because all we can do is lobby the Government to recognise their existence and give them what they need.

The myths and misconceptions about albinism are also distressing. Some parents believe that children with albinism can ‘tan’ if they stay in the sun. This, of course, only leads to great damage to their skin. Many fathers abandon their wives when they produce children with albinism, without realising that both parents have to be carriers of albinism for a child to have that condition.

Public education

The situation may seem hopeless and depressing, but I believe the future is promising for people with albinism. We have a new Constitution that guarantees all Kenyans a right to health. I believe the Government will wake up to its responsibility soon and make sunscreen available in all hospitals for people with albinism, particularly children.

Through the public education and advocacy work that I and other people with albinism are doing, I am hoping fathers will accept their children with albinism, and employers will not think twice about not employing a person with albinism.

I also hope people with albinism will get the education and career opportunities I know they are capable of, unhindered by their skin and perennial social exclusion. I also hope their careers will not expose them to direct sunlight. I am one of only two lawyers with albinism in Kenya, and I would love to see the numbers go up.

We all need support systems to see us through life, particularly when it has the kind of challenges that many of us have had to deal with. I am blessed with such a system — my family, an extended family that loves me for who I am, and a couple of great, close friends who have been a great source of strength for me.

I am not married, and I am not sure I will ever be, but who knows?