Betty Akello, 35 is a peasant farmer located deep in Oyam district. A mother of six children, three of whom: Apollo Cinderella 17, Rebecca Akullo and Samuel Okello are with Albinism. Despite being ridiculed by the community, Akello has continuously disregarded societal judgment, outright stigma and discrimination owing to half of her children's albinism condition. She is instead worried about the future of her three children with albinism, a congenital disorder that causes the skin, hair, or eyes to have a complete or partial absence of pigment.

Skin cancer adds another layer of threats to the lives of Persons with Albinism in Uganda
“I have always worked hard to give them all they need, but the prevalence of skin cancer worries me day and night given the harsh weather of Northern Uganda,” narrates Akello. That said, she travelled with her three children with albinism from Telela village, Ngai sub-county in Oyam District to Gulu Regional Referral Hospital for one of the skin cancer screening and treatment camps organized for PWA, a distance of about 120 kilometres.

According to Akello, her children urgently need to be checked for skin cancer by a dermatologist and given sunscreens in due course. Even then, its still expensive and yet on the other hand Akello cannot afford sunscreens on her own. Thanks to the team at Source of the Nile Union of Persons with Albinism, Advantage Africa, and other well-wishers who have always reached out to meet the needs of such families. This is just a drop in the ocean as the need is just wide spread.

Statistics from tNile Union of Person with Albinism (SNUPA) indicates that about 90% of persons with albinism die of cancer before their 40th birthday. This is mostly instigated by a lack of sunscreens and other protective gears to protect people living with albinism against the extrem weather condition.

What next? - We are trying to improve access to basic medical care by supporting an outreach mission to persons with albinism in the area of Northern Uganda with sunscreen for improved quality of lives.

With the enormous challenges faced by the already struggling persons with albinism and their caretakers, interventions by the community, government, and private sector are long overdue. thus the formation of this unique program that seeks to push forth for inclusion and protection of the rights of persons with albinism thought the force of digital media.

"Through digital media platform we want to change the perception and set an agenda that inspires action and conversation on the subject of Albinism. The more we talk about Albinism, see them in the public sphere, share and encounter their life experiences, the better we can help change mindsets from thinking in abstract to reality,” narrates, Pat Robert Larubi the lead champion of #Action4Albininsm.

He adds that, albinism is not the problem, but the perception that people have about those with albinism is. So, by simply changing the societal way of thinking about albinism and the challenges surrounding the condition, person with albinism will be accepted at home and society at large. Ultimately, other challenges like recurring attacks and the burden of skin cancer could easily be overcome.

Join the challenge, Inspire change today!

The struggle to protect, support and save persons with albinism in Uganda and beyond is a collective one. We are seeking for contributions from the general public, civil society, the private sector and government for improved quality of lives for all Persons with albinism in our midst.

No single contribution can be considered "small." whatever your contribution will enable us provide high protection sunscreens, long-sleeved shirts, sun glasses among other protective gears.

We know the needs are overwhelming, but your support towards this cause is a big step to achieving a healthy community where persons with albinism will feel cared for, valued and loved.

Thank you!

TogetherFirst before we can work for all in our society. Let’s thrive to – Leave No One Behind.