A Rwandan Girl's Journey: Breaking Down Stigma Around Albinism

Sifa is a 13-year-old girl from Nyanza District, Rwanda. Born with albinism, she has faced numerous challenges. Her story is similar to other children with disabilities who face discrimination and stigma.

When she was little, Sifa’s neighbors mocked and pointed fingers at her. The challenges continued when she started school. She began getting blisters from sun exposure and had difficulties seeing the chalkboard, which badly affected her school performance.

Sifa’s mother, Ruth, said she was concerned when she realized her daughter was different.

“After discovering that my baby was born with a disability, I was very much worried about what people would say, how the family would react, and how my child would be able to adapt to this judgmental society.”

From Diagnosis to Solutions: Sifa’s Life Transformed

In December 2023, Sifa’s life changed when the Uburezi Iwacus Project began supporting her. She had a special education needs assessment. The result showed that Sifa has visual problems (nystagmus, which causes uncontrolled back-and-forth eye movement and reduced vision), so she was referred to the district hospital for further support. From the district hospital, she was transferred to an eye specialist, medically diagnosed, and finally provided with glasses and a magnifier to support her when she was reading. Her skin issues were also treated at the nearest health center.

A New Chapter for Sifa

Currently, Sifa is a happy little girl who attends school at GS Matara in the Kibirizi sector. She is in fourth grade, and her latest progress report shows improvement. Her progress report indicates an improvement, and she is performing well. Sifa describes her experience:

“My name is Sifa Tuyizere. I live with my mother, Ruth. I was born with albinism, which was the subject of my isolation and sometimes discrimination in the community. Going to school was a challenge for me due to my skin condition. However, in December 2023, my mother learned about Uburezi Iwacu project interventions from a Sector Representative named Jean de Dieu. He told my mom to take me where they were assessing children with disabilities, and I was able to be supported accordingly,” 

Sifa adds, “I was sent to the hospital, where I got eyeglasses and a magnifier, which I use in class. Also, Uburezi Iwacu helped me to have an appropriate uniform that protected me from the sun, and I got skin lotion for my condition. I am very thankful for all the support because it brought many changes to my life. I can read without any problem, and my skin condition has improved. I wish to continue my studies and achieve more as I grow.”

Like Sifa, her mother, Ruth, feels much more supported in their community after connecting with the Uburezi Iwacu Project.

"Since then, I have known where to knock when looking for support for my child. I didn’t know that I could get the skin lotion for free. Also, I learned there is a group of parents (Parent Peer Support Network) I can join to learn positive parenting skills, which we all need as parents.”

Ruth continues, “I like the awareness-raising sessions in our community. They have changed the attitudes of many people without disabilities. Even though we still observe some negative attitudes and mindsets from some families of children without disabilities and some discrimination from the community, surely there is a big improvement. As parents, we are proud of it. We hope that all the struggles we have gone through will be history soon. Now, we strive for a better future for our children.”