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.