Elena's Story

By Standing Voice

March 25^th, 2026

I have lived at an orphanage since I was two years old, after my family made the decision to bring me somewhere safe.

My mother had to leave to find work, and I was left with my grandmother.

In the village where I was born, harmful beliefs about albinism meant that people with albinism were at risk of being attacked or killed. Many believed albinism was a curse.

Because of this, my family made the difficult decision to bring me to the orphanage, where I could live safely and be protected, without fear.

That decision changed my life. At the centre, I found a different kind of home. There were other children who, like me, were not living with their parents. We shared similar experiences, and that made me feel less alone.

I received both my primary and secondary education there, and the centre supported me by paying my school fees. They also provided me with basic care, including sunscreen, which helped protect my skin from a young age.

My childhood at the centre felt stable and supportive. I was surrounded by people who treated me equally, and I grew up alongside other children who understood what it meant to face challenges from an early age.

I still see my mother, but she works far away, so I only see her once or twice a year.

My father is not part of my life. He left when he saw that I had albinism, as he believed I was cursed.

I don’t know where he is. My mother tells me he works in a mine underground so he doesn’t get my calls. I have only ever spoken to him once.

At first, this really affected me. But over time, my confidence began to grow, especially as I met other people with albinism who were standing up for themselves and advocating for their rights. Seeing others like me helped me to believe in myself.

At school, I was the only student with albinism, but I was fortunate in that I did not experience the same level of discrimination that many others face. At the orphanage, I was treated equally, and there were also other young people with albinism living there.

Even so, stigma still exists for people with albinism beyond the campus. Sometimes, when passing through neighbouring villages, I am called names or mocked, especially by those who do not understand albinism. This makes me feel sad, because I know I do not deserve to be treated that way.

At the same time, there are also practical challenges that make it difficult for many people with albinism to access healthcare. Before support services were available, people often had to travel long distances to reach hospitals, and the cost made it difficult for many families. At the campus, they tried their best to take us to hospital when we had a serious problem, but regular care was not always possible.

Without access to sunscreen or regular check-ups, skin problems quickly become serious. Some people developed painful wounds or skin cancer, and by the time they received treatment, it was often too late.

When I first learned that regular support was available in my local hospital through Standing Voice’s programmes, I felt a great sense of relief.

Now, I attend clinics regularly, where I receive check-ups and guidance on how to protect my skin. I have learned how and when to apply sunscreen properly, and what kind of clothing and hats offer the best protection. This has made a huge difference in my life.

Before, I did not fully understand how to care for my skin.

I was only applying sunscreen once a day and was not using it correctly. Now, I am able to protect myself properly and feel more in control of my health. I am also able to spend more time outside safely, which has made me feel so much more confident in my daily life.

Accessing these regular care has not only improved my health, but also given me the knowledge and confidence to take better care of myself.

I am currently supported by an educational scholarship and studying advanced level subjects, including physics, chemistry, biology and mathematics. Education is very important to me, and I am determined to continue my studies and build a future where I can support others.

My dream is to become a medical doctor, specialising in dermatology, so that I can help treat people with skin cancer, especially those with albinism. The support I have received has inspired me to give back. I want to help others in the same way that I have been helped.

Although things are improving, people with albinism are still sometimes treated as if they are different or less important. In some communities, harmful beliefs still exist, and there is still a need for education and awareness.

I believe that change begins with understanding. People need to be taught what albinism is, what causes it, and how, with the right tools, people with albinism can live healthy and successful lives like anyone else. Only when people and communities understand this, will we be treated fairly and included fully in society.

I feel hopeful for the future. I want to complete my education, build a career, and continue supporting others with albinism. I believe that with the right knowledge, support and opportunities, people with albinism everywhere, can achieve their goals and live without fear.