Fighting all the odds that came his way wasn’t an easy journey, however, Dr Nicodeme Hakizimana, who struggles with albinism, a skin condition, now has a doctorate in Theology from Minnesota Graduate school of Theology in the US where he recently graduated from, making him the first Rwandan with albinism to do so.

He didn’t go that far just for himself, he says, "It is to inspire all the young people with albinism who are held back by societal biases and stigma. Now Rwandans will know albinism doesn’t mean lack of intellectual capacity,” he says. Dr Hakizimana’s journey has not always been a celebration. He has fought his way to the top, he says. 

Name-calling

34-year-old Hakizimana was born in a family of nine children, from Musanze, in the northern province of Rwanda. "Out of nine children, two boys and a girl were born with albinism,” he says.

Albinism is a rare genetic condition where there is little or no melanin pigment in the skin, hair, and/or eyes. The latest data shows that there are approximately 1,238 people with albinism in Rwanda.

With members of Organization for Integration and Promotion of People with Albinism (OIPPA) which he founded to offer a support system to people with albinism.  Photos/Courtesy

Growing up, Hakizimana’s parents were very supportive, loving and always pushed him to acquire an education. "I have never experienced isolation or discrimination from home, whether by parents or siblings. Rather from outside, in the community, at school or anywhere I passed,” he says.

"I was called/shamed with ugly names, like ‘nyamweru’, ‘ikimanuka’, and so on. Every time it would break my heart,” he shares. 

Among the many instances where Hakizimana was stigmatised and ridiculed, one headmistress at his former secondary school refused to shake his hand when greeting all his colleagues who were with him. Nevertheless, Hakizimana moved forward with grace and no grudge.

"I was short-sighted which made it difficult for me to follow in class or read the blackboard,” he says, "I would stand in front to be able to read and students would complain and say that I was a nuisance to them. Despite everything, I had to study no matter what.”

His determination saw him secure a Bachelor’s degree in education at the former Kigali Institute of Education (KIE), two Master’s degrees in education planning, management and administration options from Mount Kenya University and the recent Doctorate degree.

Changing history

Dr Hakizimana founded the Organization for Integration and Promotion of People with Albinism, OIPPA, in his first year of college. "At least I had support at home. I wanted to offer a support system, through OIPPA, for those like me who didn’t have it.”

OIPPA advocates for rights for persons with Albinism in Rwanda. It has already brought a positive change in the disability movement in the country where they incited the government to create/revise some laws and took specific measures to protect and prevent skin cancer among people with albinism by availing sunscreen oils. 

OIPPA is characterised by green and yellow colours. "Green symbolises life. It is a sign that we embrace life and choose to pursue our dreams. Yellow symbolises the sun, as our harshest enemy. Basically like all the challenges we have to fight every day,’ he says.

Latest data shows that majority of persons with albinism die from skin cancer due to exposure to sun rays.

"I was inspired by a friend who always pushed me to make a difference. He told me ‘Nicodeme, since you are studying, keep working hard so you can be an example to fellow people with albinism.’ So with OIPPA, I wanted to change history and show that there’s more to us than our condition,” he adds.

Hakizimana also has a family of his own, a wife and a two-year old daughter. "All my siblings, with albinism, and myself are married and have kids who don’t have the same condition,” he says with a smile.

Albinism is an inherent genetic trait. A kid becomes albino when both parents have inherited the albinism gene. 

Dr Hakizimana plans to dedicate his efforts to advocacy works from now on. "I hope young people with or without albinism learn from my journey of not giving up. Especially for persons with disabilities, may society stop stigmatising them, may we empower them and allow them to put to use their intellectual capabilities,” he says.