“Where there’s a wish, there’s a way” is the motto that inspires us to implement the skin cancer prevention project that will transform lives in Uganda from 2022.
People with albinism in Uganda certainly do not have an easy path, being born with this condition, and in an environment lacking in resources, it is as if their story is written in a script from which they cannot escape, growing up with social stigma and where the sun appears in every scene as an enemy that makes them vulnerable to premature death from skin cancer.
In these 10 years of struggle to transform this reality, we have realised that there are many obstacles to overcome to radically change their history, but progress has been made so that people with albinism can protect their skin, strengthening their self-care and becoming more empowered every day.
“WHERE THERE IS A WISH, THERE IS A WAY”
In 2022, thanks to the support of the Croda Foundation, we joined forces with the Source of the Nile Union of Persons with Albinism (SNUPA) and the Elgon Foundation for People with Albinism (EFPA) to implement the “Sun Protection for People with Albinism project in Uganda”, a programme that is reducing the incidence of skin cancer in 400 people with albinism in nine districts of the country, making the sun a kinder character in their daily lives.
Fundación Croda is an entity that focuses its efforts on sustainably improving the quality of life of millions of people around the world, who support us with resources and strategies to achieve the desired impact.
To make the implementation of the programme sustainable over time, we worked with and trained two local organisations in health management: SNUPA, an organisation led by Peter Ogik, a person with albinism with great charisma and leadership who, without doubt, knows the particular needs of people with his condition and is determined to transform their lives; and EFPA, who promote the inclusion of people with albinism in the districts of Kapchwora, Sironko, Manafwa and Bududa in Uganda, knowing very well the environment where the sun protection clinics are held.
In March this year, we started the third phase of a project that we are implementing as a network and that leads us to the conviction that “little by little, people with albinism in Uganda will be able to perceive the sun as a necessary element for life and not as an element that separates them from it”.
HOW ARE WE ACHIEVING THIS?
- Sunscreen distribution: Over 2,500 bottles of Umozi Max SPF 50+ sunscreen have landed in Uganda, of which two are given to each patient to cover their care for 4 months until they have their next appointment with the health staff at the clinics. This ensures that they acquire a powerful element that makes them less vulnerable to the sun’s rays.
- Education for people with albinism and their families: We hold educational clinics where we teach people with albinism about their condition, addressing topics such as: the impact of the sun on their skin, how to use sunscreen and other protective elements such as sunglasses and hats to avoid direct exposure to solar radiation; prevention of skin cancer, among other topics. We also talk about surgical and palliative treatments for people with advanced cancer.
- Training of healthcare workers: To date we have trained 90 healthcare workers on albinism and skin cancer prevention, using a more humanitarian approach that allows them to understand and empathise with the current situation of their patients, being able to support them on this path of self-care.
- Training for civil society organisations: We provide training in health management to local organisations (SNUPA and EFPA) to strengthen their management and leadership skills, thus enabling them to continue the programme autonomously in the future.
SAVING LIVES
The focus of the project is the prevention of skin cancer, however, in many cases this cancer is already present, advancing without stopping, so the fight against it represents an important goal for us and our patients; a goal that is framed in a countdown that, unfortunately, we do not always manage to overcome.
Fortunately, thanks to Fundación Croda, two people with albinism were successfully operated on in 2023: Nawire Milly, a 30-year-old mother who developed multiple lesions on her chest, behind her ears and on her legs; and Mujasi Issa, a 52-year-old man who was diagnosed with 8 cancerous lesions. Today both are on the road to recovery and both they and their children could write a new story.
IMPACT ACHIEVED
We launched the project in July 2022 with 257 beneficiaries and in this second phase we have reached a further 88 people, transforming a total of 345 lives. This shows that the objectives are being achieved and that awareness of the programme is spreading in the nine districts involved, improving the quality of life of people with albinism in Uganda.
“Skin health has a direct impact on mental health. That is, when it is healthy it can improve our self-confidence and self-esteem, but when it is damaged, it can make us feel diminished, affecting our confidence when facing life”.
Fortunately, with this project we can help people with albinism to acquire skin care habits, which correspond to photoprotection routines that in most cases they did not know existed. In this way, these practices have been incorporated into their daily lives, allowing them to improve their lives while learning to be responsible for their own dermatological care.
For all the above reasons and the great impact achieved so far, we will continue to work to advance this initiative, because “Where there’s a wish, there’s a way”.
