Albinism awareness gets a makeover
In Practice
By Emily Margosian, assistant editor, May 1, 2019
“What really struck me was that there were no dermatologists on the ground there,” recalls Victoria Williams, MD, assistant professor of clinical dermatology at the University of Pennsylvania, of her first visit to Botswana as a resident in 2014. Beyond the lack of established dermatologic care in the region — which was primarily composed of visiting residents — Dr. Williams was also profoundly impacted by the poor quality of life of patients with albinism. “These patients were basically being torn apart by skin cancer just the worst sun damage I’ve ever seen,” she said. “Often they’re also nearly blind and don’t have access to glasses. It affected me greatly to see people having to live like this with a disease where all the comorbidities should be completely preventable.”
What was more heartbreaking, however, were the effects of the region’s extreme social stigmas regarding albinism. “What struck me the most was that these patients had such low self-esteem that they couldn’t even look me in the eye,” said Dr. Williams. “In Botswana, most of the general population still has absolutely no idea what albinism is. They think it’s a curse, that they’re not human, or if they touch them, they’re going to catch it. There are just so many misconceptions.”
Moved by the plight of these patients, Dr. Williams assumed a full-time position as a dermatologist in Botswana for two and a half years following residency. “I was employed through the Ministry of Health of Botswana, and fully integrated into the health care system like a truly local Botswana doctor,” she said. To address the immediate need for adequate sun protection, Dr. Williams launched a sunscreen program in the country in 2017 through the help of the AAD’s SkinCare in Developing Countries Grant. “People with albinism should be able to live a normal life if they’re given access to the right resources and medical care,” she said. “Botswana is a desert climate; it gets really strong sun and most people have to work outdoors. I researched access to bulk sunscreen and was able to find a supplier in South Africa. I started making trips down there and would package it myself to distribute to patients during clinic. Along with sunscreen, they would get counseling on albinism, counseling on sun protection, and a wide-brim hat.”
After tackling the issue of sun protection, Dr. Williams decided to go a step further to address the social stigmas faced by Africans with albinism. “I started working with the local albinism association, the Tshimologo Association for People Living with Albinism, and one of the things we did was organize the first celebration for International Albinism Awareness Day in Botswana,” she said. After a successful launch in 2017, the following year it was decided that in addition to an albinism awareness day, a Miss Beauty with Albinism Pageant would be launched to further increase public awareness of albinism and social inclusivity. “I’ve never seen such a transformation in people,” said Dr. Williams. “These men and women with albinism have gone through their whole lives just feeling like they are hideous and worth nothing, and the event basically gave them the chance to feel beautiful and be perceived by others as beautiful for the first time in their life.”
According to Dr. Williams, the first Miss Beauty with Albinism event was able to come together on a near-shoestring budget through the help and support of local businesses. “Different boutiques agreed to sponsor outfits, and the venue was provided by one of the local universities,” she said. “I also donated whatever I had in terms of makeup and nice clothes, and we just put it together with whatever we could.” However, for many participants, this Cinderella moment went far beyond just putting on a pretty dress. “Before the pageant, we did a little boot camp where we taught them how to walk with confidence, how to speak in public, how to present themselves to other people. To watch the process of these people going from the first day of boot camp to seeing them on stage — I’ve never seen such a transformation,” said Dr. Williams.
Now an annual event, the next Miss Beauty with Albinism Pageant will be held this May. “It’s just an amazing gift to be able to give to people, and to make the society aware that people with albinism should be seen like anyone else,” says Dr. Williams. “They can be beauty queens; they can be models; they can be doctors; they can be anything they want to be.
