From ignorance to discovery
About three years ago I discovered that there were people with albinism in Malawi. The truth is that I had never considered the possibility of their existence and I am ashamed of it: a feeling that has diminished when I realized that, unfortunately, I was not the only surprised at the existence of these people. Not only do they face the sun – their greatest silent enemy – which means that the majority of people with albinism in Africa do not reach the age of 40 because of skin cancer, but they are also victims of lethal superstitions, which lead to discrimination, persecution, mutilation and even murder. Ignorance of this reality is but another example of how engrossed we are in our First World problems, all of them insignificant if you compare them with the difficulties faced day after day by people like the ones I recently met in Malawi.
Field trip with Beyond Suncare
But this discovery did not come alone: along with it, I also discovered the existence of Beyond Suncare, formerly Kilisun Care NGO founded by Mafalda Soto which fights for the improvement of the quality of life and rights of people with albinism in Africa and which is now working mainly in Malawi and Tanzania. His work and the reality that Beyond wants to change were stuck in my heart and sometimes, over the course of these three years, I surprised myself thinking about it. It was THE REPORT, the report of denunciation and awareness with which I had always dreamed: a project that this year, thanks to Beyond SunCare, will become a reality this June in the form of Final Degree Work.
“Let life teach you and surprise you”, I told myself when Mafalda agreed that I joined the Beyond team
Malawi, the warm heart of Africa
Malawi is, according to the World Bank, one of the poorest countries on the planet. With very high infant and maternal mortality and a life expectancy of 54 years, 80% of the Malawian population lives in rural areas, where the economy depends on agriculture, which in turn depends on rainfall, and access to health care is very difficult – a situation that is fully understandable when one considers that there are only two medium-size hospitals in the country, in Lilongwe and Blantyre, political and economic capital respectively.
But this sad and harsh reality contrasts, offering a relentless life lesson, with a glance full of light and hope and the smile from ear to ear of its inhabitants. Hakuna Matata is the leitmotiv that the thousand and one colours of their clothes give off, as if they wanted to vindicate their desire to live, to not want to surrender, by shouting and through their clothes. Amidst the jubilant Malawian hustle and bustle, it is estimated that between 7,000 and 10,000 people live with albinism, who suffer serious discrimination, attacks of violence and other abuses of their human rights.
A piece of my heart stayed with them
Thanks to the Beyond Suncare team, I had the opportunity to meet some of them. Most of them live in remote, hard-to-reach areas that we managed to reach after hours of travel. Their home is a group of small and precarious huts without water or electricity: the activity and life of these small communities stops when the sun goes down. But not only that: malnutrition, lack of hygiene due to the difficulty of access to water and the scarcity of clothes with which to protect themselves from the sun are at the top of the agenda. Due to the upsurge in violence against people with albinism in Malawi since 2014, many of them do not dare to leave the villages. They are afraid to go to the doctor or school in the case of younger children.
They are people with very hard lives that I knew: human beings like me, but with unjustly opposed vital, social and economic realities.
The need is real: they told us that they need more doctors, more high quality photoprotectors like the one Beyond Suncare provides free of charge, more areas and people to be treated, more clothes, food and education and, above all, safer housing and real government actions that put an end to the permanent terror of being persecuted, mutilated or murdered that people with albinism in this country face day and night, without rest.
Today, Beyond SunCare is carrying out a study in Malawi together with local dermatologists and APAM (Association of Persons with Albinism of Malawi), which will be finished in June and includes the distribution of the NGO’s photoprotector together with an educational work, since a sunscreen is of little use if the person who uses it does not know how to do it, puts it on at night or under his clothes.
The aim of the study is to provide evidence of the improvement being provided by the Beyond SunCare service package and thus involve the Ministry of Health: not only in the distribution of photoprotectors, but also in the training of health and educational personnel to reinforce knowledge about albinism, thus contributing not only to reduce skin cancer but also to demystify the false and harmful beliefs that revolve around this genetic condition.
They have been seven very intense days, next to incredible and guilty people that a piece of my heart has stayed with them. Thank you.