End skin cancer for people with albinism in Uganda

Since we last updated you, your support has enabled 47 children and adults with albinism in the districts of Pallisa, Bugiri and Butalejja to receive comprehensive skin checks from our dermatologists Dr. Inena and Dr. Ngobi. 23 out of those checked required cryotherapy to remove pre-cancerous lesions, indicating how crucial these regular assessments are to keep people safe from developing skin cancer. All of the clinic attendees received new supplies of high SPF sunscreen and wide-brimmed hats, as well as sunglasses if required.

As ever, alongside the practical support of dermatological checks, SNUPA team members were on hand to lend a listening ear and provide counselling and advice to attendees struggling with a variety of challenges. The concerns shared during these clinics help shape SNUPA and Advantage Africa’s strategic planning and priorities. They ensure that we are addressing the real issues raised by people with albinism, and parents and carers, themselves.

For example, at the Bugiri District clinic SNUPA told us, ‘One parent reported experiencing persistent discrimination from family members following the birth of their child with albinism. The situation escalated to the extent that the father abandoned the family. This highlights the continued need for community sensitization and family counselling, from the moment of birth, to prevent albinism-related stigma.’

Everyone in attendance at the clinics is equipped to be confident in their understanding of albinism during the comprehensive health talks that start each session. Edmond of SNUPA reminds attendees that ‘It's only through properly understanding albinism that parents and persons with the condition can stand up and sensitize the communities against the myths and misconceptions surrounding it.’

Vision-care and photochromatic spectacles for young people with albinism are also consistent, pressing priorities brought up during the clinics. We are doing our best to respond to these needs to ensure that pupils with albinism don’t miss out on education, can reach their full academic potential and improve their future outlooks.

In the past quarter, your gifts through GlobalGiving also contributed to a large skin clinic held in Jinja in July. This was part of the slightly delayed commemoration of International Albinism Awareness Day (IAAD) 2025 which SNUPA’s normally holds each year on 13th June. Very aptly, the United Nation’s theme for IAAD 2025 was ‘Demanding our rights: Protect our skin, preserve our lives.’ SNUPA’s skin clinic helped to do just that: 130 people with albinism received dermatological checks and of these 50 received cryotherapy treatments. All 250 children and adults with albinism who attended our IAAD event received sun protection materials including sunscreen and wide-brimmed hats, and the majority received new long-sleeved shirts.

Things are slowly changing for the better, but we must not let up in our determination to help people with albinism to protect their skin and preserve their lives. In the words of the SNUPA team reporting from these latest clinics ‘We are continuously grateful for all your support!’

In the quarter since our last update, your donations have helped 54 children and adults with albinism to have comprehensive skin checks and receive sunscreen and wide-brimmed hats in the districts of Kibuuku, Butalejja and Budaka. Just over half of them also received preventative cryotherapy to remove pre-cancerous lesions.

Our clinics were held in government health centres so that the SNUPA team could train local health workers at the same time, enabling them to become increasingly accustomed to the skin care challenges of people with albinism. It also gave hospital staff the opportunity to engage people with albinism about other health issues and make sure they felt welcome and able to use other medical services whenever required. This is a major breakthrough as previously many people with albinism have felt fearful or reluctant to seek help in case they faced discrimination and were turned away.

Our practical support is always accompanied by advocating for local and national change. Across the districts, local government representatives were invited to attend the clinics to learn about the challenges faced by people with albinism. We are encouraged that many of these representatives are themselves becoming committed advocates for children and adults with albinism. For example, one District Education Officer had personally ‘provided five wide-brimmed hats for pupils with albinism and directed schools to supply customised long-sleeved uniforms.’

The SNUPA team was also happy to report that their regular training about keeping safe from the sun was being heeded by participants. ‘Most were protected from the sun and all reported using sunscreen and avoiding sun exposure between 10 o’clock in the morning and 4 o’clock in the afternoon.’

People with albinism, parents and carers are always keen to share stories and challenges with their fellow attendees. A young mother reported that her husband’s family blamed her for having a child with albinism. After attending the health talk at the start of her child’s clinic, she committed to bringing her husband’s relatives to future sessions to improve their understanding of the genetics of albinism. Empowering participants with knowledge to overcome fear, myths and discrimination is a crucial part of our work to improve their daily lives.

As ever, the skin clinics enable us to find out more about wider challenges. In all the clinics, we were alerted to an increased demand for reading glasses for children with albinism so that they can effectively pursue their school studies. The SNUPA team told us ‘Parents noted that their children struggle to participate and enjoy school. They particularly struggle with visually intensive subjects like mathematics.’

With your help, our clinics will continue to provide much more than skin checks for people with albinism. Each occasion brings people together for friendship, reassurance and solidarity, to share pressing challenges, grow in knowledge and become passionate advocates for change. Thank you for joining us in this transformational work!