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Dr Williams on Albinism Awareness

Dr Victoria Williams, an assistant professor of dermatology at the University of Pennsylvania in Philadelphia, emphasizes the medical and cultural need to increase awareness of oculocutaneous albinism (OCA) and improve the quality of life of people living with albinism (PWA).

"First of all, I think when there are any human rights injustices in the world, it is important for all societies to be aware and to try to intervene to help," said Dr Williams. "As physicians it is even more so our duties to stand up for those that don’t have the ability to advocate for themselves—which is the case for PWA who have long been neglected in many African societies and really don’t feel like they have the confidence or the voice to help themselves."

Dr Williams noted that OCA has an estimated worldwide incidence of 1 in 17,000 births, but rates as high as 1 in 1000 births are reported in certain parts of Africa. Further, in certain cultures, a number of myths and superstitions are attached to OCA, putting the lives and safety of PWA at serious risk. Regardless of psychosocial impact, PWA can face serious health concerns, including increased morbidity and mortality from treatable skin cancers due to limited access to health care.

"Dermatologists in particular are uniquely positioned to make a real difference in the health of PWA," continued Dr Williams, "because we know how completely preventable sun damage and skin cancers are and how easily treatable they are when diagnosed early. We know that with education and access to basic dermatologic care, PWA would never be in the position to be mutilated or die from skin cancers. We don’t often get the opportunity to save lives day to day and this is an area where our skills and expertise can be truly life changing and life saving. So I think we need to really step up and use our unique skillset to fill this need."

Read her full-length article titled Developing a Care Program for Neglected Patient Groups: Oculocutaneous Albinism, featured in the June 2020 issue of The Dermatologist.


Transcript
Dr Williams: You've probably seen patients with OCA around town. You probably have patients that they might not even realize have OCA because we're so used to being in a society where there's so many different diverse skin tones, people of different nationalities, and there's also a large portion of Caucasian people. We don't really pay much attention when we see a patient with lighter skin tone. Our society have a lot more access to healthcare, education, social support systems. We obviously have our problems without as well with being accessed by a developing country. People have much more access to these resources.

Patients with albinism can lead a completely normal life and go unnoticed. This is in stark contrast to African countries, where having lighter skin makes you completely stand out because you're being surrounded by a society where people are predominantly darker in skin. If you have African features and light skin, everyone's going to notice. That, combined with the fact that there are a lot of stigmas, is associated with albinism. Even though it's more common, it's much less understood and less accepted.

The biggest issue is that there are these superstitions attached to albinism. People fear when they see someone who has this lighter skin tone. They think that they are contagious. They stay away from them. They think that it's going to be spread to them. That's one problem. The other problem is that they're objectified as being completely inhuman. Within African cultures, African traditional medicine believes that the body parts of people with albinism are good luck so that they can bring you health, wealth, and fortune. This drives this horrible practice of hunting, killing, and dismembering people with albinism and selling their body parts to be used in these rituals. It's absolutely horrific. It's a human rights emergency that I don't think enough people know about. This, combined with other superstitions, just makes it impossible for people with albinism to be included normally within society and a lot of African cultures.

Three most important issues that dermatologists need to think about if they have patients with albinism, number one is getting them plugged into vision care. Even though that's not our area of expertise, you make sure your patients are able to get an eye exam. Early in childhood, that's going to be the thing that can change the whole course of their life. Once they have normal or near‑normal vision, they have access to interacting with society. They can have a better education. They can have access to employment opportunities. That's a big thing to make sure. The second thing is making sure your patients are getting educational support they need. The third thing where dermatologists come in is in sun protection. Making sure that your patients with albinism understand how important this is. It's important with children, especially children with albinism who have a family where everyone else has darker skin and where their family might not necessarily know much about sun protection because it hasn't been a part of their lives. These children are put in a position where they're told that they need to do all these things that they don't see anyone around them doing. The brothers and sisters or friends might make fun of them. This can have really long‑term consequences. Even spending a day at the beach without sunscreen for children with albinism, that can cause sun damage that they have to pay for years to come. If you take a time to champion and teach these children and their families that they need to normalize this behavior and make it part of their daily routine so that people with albinism understand that their skin health is the number one most important thing that they need to think about day to day.

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