End skin cancer for people with albinism in Uganda

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!