January 22, 2021

Putting yourself in the shoes of a person with albinism | Society

Putting yourself in the shoes of a person with albinism | Society

If the story of Mafalda has made you think and you also want to help this cause to change the world


Elizabeth Taylor had, probably, the most sweeping look in the Hollywood of the 60s because she was mutant. Lyz was born with a strange genetic condition, two rows of eyelashes in each eye that managed to emphasize more strongly that lapis lazuli that also came as standard. Lyz was beautiful because she was different, as we all are. Those freckles that dot the faces of impossible models, that redhead that you break the Instagram or that tremendous Picasso nose are just examples of mutations that retouch the genetic schemes to bring diversity and beauty in the difference. We are all beautiful because we are all mutants.

The fate of Lyz was born in London and that mutation had no greater significance than to enhance the profile of his eyes. However, Jeremía, a beautiful baby with albinism, was born in Malawi with a mutation in the OCA2 gene that, in addition to producing serious skin and vision problems, has given him the marginalization and stigma of the difference. Jeremía was born there where he trades with parts of his body to make magical potions. Their skin kills them and, above, has a price on the black market.

That ungovernable luck of being born where you do not choose and with the eyes or the skin that gives you the destiny also gives a break, very occasionally, to the weakest. Jeremía crossed paths with Mafalda Soto (Orense, 1982) at the right time, with only three weeks to live and when his albino skin burns were still reversible. "His single mother had never been told what albinism was, why his son was white. As we were telling him how to approach him, how to take care of him, he cried inconsolably with a feeling of guilt, "he explains during the interview.

Mafalda is not only pharmaceutical creator of Kilisun, a free sunscreen manufactured locally in Tanzania since 2012 and that protects people with albinism from certain death from skin cancer. Mafalda is, above all, that hand that caresses and pampers by extending the cream, which helps these lost looks can come to focus on a dignified future, which rebuilds their self-esteem, which gives work and a shoulder of relief to those black women with white skin who have also suffered because of their gender, which brings them all out of eternal gloom. Mafalda Soto is that ray of light that no longer burns you.

Feel the albino skin through ours

Hakuna jua! it's one of Mafalda's war cries. It means at night there is no sun In Swahili, it is the chant that has to be repeated over and over again by people with albinism so that they do not put on their photoresist when they go to bed. Education is essential in your program, demolish myths and prejudices with information is necessary for the model to succeed, to stop trading with your bones, desecrate their graves or to disappear the belief that sexual relations with them cure AIDS. The cream is not designed only as a chemical protection; Inside the boat there is also a master formula for those who anoint it to recover their self-esteem. It is the only way.

Mafalda arrived in Malawi in 2008 as a volunteer in a program to support vulnerable groups of the NGO Africa Directo. There he had his first contact with albinism, but it was not until he moved to Kilimanjaro, in Tanzania, that he began to calibrate the true dimension of the problem. The albinos of his age no longer existed, skin cancer had taken them before the age of 30: "How is this possible? How can you not do anything? Of course it can be done! The solution is in prevention. That was the roll up and get down to work, "reminds us half outraged.

That mental click then materialized in Kilisun and today in an integral action NGO called Beyond Suncare, where they try to help the albino skin through ours as Mafalda has done during all these years. For this they are designing a social cosmetic line that we can buy ourselves and whose profits will go to fund the programs of albinism in Africa.

Put yourself in the shoes of your parents

As the interview progresses, the team empathizes more and more with the wonderful character. Silence is complicit in a scenario that is also protagonist. The Caves of the Pontón de la Oliva, near Patones, in Madrid, make you feel out of scale when nature sets its own rules. The only imperturbable is Mafalda, who continues to mix heartbreaking stories with success stories: "After three weeks of implementing the guidelines, Jeremía's mother returned to the hospital with a smile and the child practically cured. She is stronger, safer and happier. " Or the case of Grace, that girl with albinism persecuted by the mafias and who became a great friend and partner of the laboratory: "Also the responsibility of being doing something that saves the life of my colleagues with albinism was an act of coming up brutal. That was the engine of my life, my gasoline. "

However, his voice breaks when he starts talking about his parents. We all need a small break. Mafalda gives in by putting herself on his skin and feeling the unending absence of a daughter who never ends up going home. By remembering all the love and support that they have transmitted without expecting anything in return. All that education in volunteering. There is no cream that protects you from the pain that causes you to feel far away from a loved one.

He has gone through hard times away from his people, hesitating for loneliness and uprooting, for a voluntary exile that inevitably hurts those who one day gave him everything. Malawi, Tanzania, France, Granada … He left for nine months and 10 years have passed. Mafalda suffered a long illness while in Africa that kept her family in suspense, but she preferred not to return to the nest while her mother, from a distance and dying of fear, contradicted her heart with tapping on the back to keep her flying: " His words were always to raise me: 'You can, you will be able to with all these challenges'. The truth is that I owe them a lot, "he explains, already with wet eyes.

Mafalda has chosen to always feel the skin of others, and that has hardened his. Sacrifice the nostalgia of the family shelter by giving a second chance to those who have never had it. In spite of all this it compensates him, he seems immensely happy and never gets rid of his eternal smile. Perhaps because he knows that the best shortcut to true happiness is to feel it first through the skin of those who need you the most. Blessed lesson.

Do you want to know the full story?

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Content adapted from the Mafalda video


In Africa, people with albinism do not live more than 30 years because of skin cancer. Mafalda created Kilisun, the only locally produced photoprotector that can help them. Today Mafalda has founded the NGO Beyond Suncare to support people with albinism in Africa.


I left Galicia to go to study Pharmacy in Madrid. I decided to do a master's degree in tropical medicine and international health in malaria issues, tuberculosis issues, leprosy issues, neglected diseases and I went as a volunteer to Malawi.


Of all the hard realities that I encountered in Africa, albinism was the one that most impressed me.


Albinism is not understood. Superstitions are created, if you have relations with a target, if it is an evil eye, if there is a spirit … There are superstitions that contemplate that having members of a person with albinism will give you a fortune, with which they are mutilated, murdered but, despite the persecutions, the sun is the great enemy of people with albinism.


Nine out of ten die before the age of 30 due to skin cancer. They are not aware of this, nobody has educated them, but neither they know it nor does the health personnel know it.

01: 22

His name was Jeremía, he arrived with his mother with three weeks to the hospital with his face totally burned; Second-degree burns, blisters, flaking face. And that single mother, who had never been told what albinism was or why her son's face was burned by the sun, was crying inconsolably with guilt.

01: 44

That was like the click to say: "How can you not do anything?" It was the seed of Kilisun, which is the first photoprotector specially designed for the protection of skin cancer in people with albinism in Africa and which, moreover, is manufactured locally.


The distribution is done for free, in the end this is an essential medicine that everyone should have access to.


The solution is there but we need more people to join, we need help to make them visible again, to give them prominence.

This content has been developed by Yoigo.


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