The ordeal of people living with albinism in Rwanda

When Andrew Bimenyimana, 43, was a young boy, people old enough to know violence is wrong were throwing stones at him.

They not only stoned him, but they also called him names that were dehumanizing and all that was just because he suffered from albinism.

He was soon shortlisted after graduating and applying for a position, and passed the exam with flying colours. They have invited him to an interview.

“I went for the interview, and when I entered the room, the interviewers were really shocked. I could see it on their faces. They then told me, ‘it’s okay! You can now leave’. They didn’t even ask me anything.”

“To have albinism and grow from a child to an adult, I would describe it as a tough war”

Bimenyimana is only one of many Rwandans suffering from albinism who have faced or are still facing stigma in society and he says this is one of the many reasons most of them live in poverty.

He was fortunate to have a loving family who did not give him up and his bravery and confidence kept him going.

He now holds a Master’s degree in Public International Law and is an assistant to the Muhanga Intermediate Level prosecutor for the National Public Prosecution Authority.

He says there is still social stigma but for people like him things are getting better.

“Some parents hide their children because of ignorance. All this affects the children’s future.”

Every June 13th is International Albinism Awareness Day.

The theme for this year is “Made To Shine,” and it has been selected to honor the accomplishments and contributions of people with albinism around the world.

Albinism is the result of lack of pigmentation (melanin) in the hair, skin and eyes, which causes vulnerability to sunlight and bright light.

Because of this, almost all people with albinism have visual impairments and are prone to skin cancer.

The UN data indicates that the majority of people with albinism between the ages of 30 and 40 die from skin cancer in certain countries.

Access to regular health checks, sunscreen, sun lenses and sun-protective clothing would be preventing the disease, however.

“If we are helped with sunscreen, our life expectancy will be raised. Because every doctor we visit tells us the sunburns lead to cancer.

“Most people with Albinism are really poor. A person who cannot afford food will not afford sunscreen,” Bimenyimana explains.

Hakizimana Nicodem, OIPPA’s Executive Secretary (Organization for the Integration and Promotion of People with Albinism) confirms that sunscreen is a luxury for many people with Albinism, yet at the same time it is a basic necessity.

“We can’t afford screening and treatment of skin cancer and we can’t afford sunscreen to prevent it. It now costs Rwf10,500.”

He suggests that the government places people with Albinism in a different category from other people with disabilities so that resources can be allocated for the systematic screening of skin cancer, and sunscreen can be purchased with health insurance, mutuelle de santé.

Hakizimana adds that they are still affected by stigmatization; calling them names, unemployment, segregation all because of their condition.

He also adds that women with albinism risk sexual harassment because there is a large misconception that having sex with them cures STI/D’s and HIV/AIDS. Most perpetrators do get away with it, however, because the victims do not feel secure enough to complain.

In such cases, he calls for the law enforcement.

“People should understand that people with Albinism are human too.”

People with albinism are vulnerable to attacks and killings especially in sub-Saharan Africa because they are seen as objects of superstition-influenced erroneous beliefs and myths. That is a threat to their lives, and in the last decade at least hundreds have been killed.