For the first couple of weeks here in Kenya, we visited schools and people in their homes. They all told of their struggles living with albinism, or living with a relative with albinism; the struggle to get sunscreen and to feel confident in themselves. It wasn’t until last week that we started meeting people with albinism that were really suffering because of skin cancer; slowly rotting away from untreated skin cancer.
We first met Steven at a gravel yard on the outskirts of Nairobi. When he was two years old, his father rejected him and forced him to leave his family and their village in Liotokitok. He went around the area from relative to relative and was eventually kicked out of each of their homes because of his condition. At age 22, he came to Nairobi in hopes of finding better work. Since 2000, he has been mostly jobless, working small odd jobs every now and again, relying on the group of friends he met in Nairobi for food and jobs. Throughout his life, he had done manual labor outside – everything from farming to loading gravel trucks. He works in the direct sunlight every single day, usually without sunscreen or sleeves.
A few of years ago, a cancerous growth started forming on his bottom lip. When it got really bad, his friends contacted Alex and the Albinism Society of Kenya for help. Steven had surgery to remove the growth but was stuck in the hospital because he wasn’t able to pay his medical bills. The National Council for Persons with Disabilities stepped in and payed his bills so he could go home. Since his surgery, he has continued to work in the sun (unprotected), and has developed more cancerous spots on his skin.
We visited a patient at Kenyatta Hospital, Kombo Jefa. He was brought from Mombasa a couple of years ago with a severe case of skin cancer on his chest. Dr. Josh (read about him in the Mombasa blog) sent him to Nairobi in the hopes that he could get treated and recover. He did improve for a while, but the cancer flared back up and is now stage four on his arm. The doctors are trying to make him as comfortable as possible.
We should not be finding and meeting these people when it is already too late for them. What is needed is prevention!
Alex has been telling me all along that people can live and function with blindness, but they cannot live if they have cancerous places all over their body. They cannot function if they are burnt and blistered. I did not fully realize the weight and severity and TRUTH of what Alex said until we met people with albinism suffering so much because skin cancer.
There are two things that need to happen – access and education.
- Access – If people with albinism have access to things like sunscreen and hats and sunglasses, skin cancer can and will be prevented. Kenyan government, doctors, and hospitals need to shift their efforts to ensure that people with albinism have consistent access to these things. Getting sunscreen in EVERYONE’S hands. Getting people with albinism to have regular dermatology checkups. Treating precancerous spots BEFORE they become full blown cancer. Not only do these things prevent skin cancer, but it helps to preserve these beautiful people’s skin. All of the beautiful children that I’ve met can remain that way as adults if they have access to sunscreen and hats and sleeves.
- Education – If people with albinism and the public in general are educated about albinism, they will know what they need to do to keep themselves healthy. If people are educated about the genetics and reasoning behind the occurrence of albinism, there will be less stigma and fewer stories of broken families. 70% of families with children with albinism are single parent homes, compared to 30% of families of “normal” children with melanin.
Alex, Isaac Mwaura, Dr. Josh, myself and many others are really struggling with what to do and how to handle this situation. A change needs to happen.