Vitiligo is a long-term skin condition in which patches of the skin lose their pigment, becoming white with sharp margins. The disorder, which affects roughly 1-3 percent of the population, is otherwise harmless physically, but it can result in psychological stress and social stigma, as well as an increased sensitivity to the sun.
64-year-old Brazilian grandfather João Stanganelli Junior lives with vitiligo, with it becoming gradually more noticeable since it first appeared in his 30s.
Having recently become semi-retired from the gastronomy industry due to unrelated health issues, João decided to take up a hobby to keep himself active and engaged. He and his wife took up crocheting, and while it was difficult at first, he soon got the hang of it.
“At first my fingers and back hurt a lot, today no more,” João told.I’m not yet retired, I still keep up my old work with food, but much less intensely. At the moment I spend 90% of my time with the dolls. I have many orders.”
João started making more of these inclusive dolls, including a doll in a wheelchair amongst others. They were all designed to help children feel ‘normal’ and valued, no matter what kind of condition they might be living with.
“My view of vitiligo seems to me to be very different from the general, I think it is necessary first that you have vitiligo, after this acceptance you choose what you want to do,” João continued. “I still quote Benjamin Disraeli: ‘Life is too short to be small.’”
João recently made a doll for author Tati Santos de Oliveira, whose daughter Maria Luiza was three years old when white spots began to gradually appear on her little legs, back and arms.
After a diagnosis of vitiligo, Tati plunged into all available literature. “When I learned of the diagnosis, I sought, in addition to treatment, publications for her to feel represented,” she said. “I did not find in the market any work on the subject for children. Then it clicked!”
Just two days later, and Tati had written ‘A Menina Feita de Nuvens‘ or ‘The Girl Made of Clouds.’ “The book tells the story of Maria Luiza and her special secret. She has spots made of clouds. It is a way to treat the acceptance of the disease with delicacy.”
João loves the book and told us that it is “a great information tool for parents and children about vitiligo, so I always make it known.” Let’s hope we see an English translation one day soon!
Understanding and exposure to difference is the best way to promote inclusion, whilst fighting the social stigma that ignorance fosters. João is doing just that with his newfound hobby, and at the same time, bringing a smile to many young children in the process. Bravo João!