By Claire Gibson, 4th-year student nurse, UFV
International Albinism Awareness Day (IAAD) is celebrated every year on June 13 as a way to celebrate the human rights of persons with albinism (PWA) worldwide. “Strength Beyond all Odds” is the theme for 2021.
Albinism is a rare, non-contagious genetic condition that is hereditary, especially if both parents carry the gene. There are different types of albinism, but the most prevalent type reported in sub-Saharan Africa (SSA) is the Oculocutaneous Albinism II (OCAII), wherein the production of melanin is impaired by the OCAII, manifested by lack of pigmentation in the hair, skin, and the eyes. Albinism is not inherent to a certain race nor gender; approximately 1 in 18,000 people are affected by this condition globally, and the prevalence is reported to be higher in SSA with estimates of 1 in 1400 people.
Melanin deficiency in PWA poses many health risks, and the most significant risk is their vulnerability to skin cancer (Kromberg & Manga, 2018). The inequities and lack of healthcare infrastructure in many low-and middle-income countries (LMIC) mean that PWA has a high mortality rate from skin cancer, with a majority of PWA dying between the age of 30-40 (United Nations, n.d). These deaths are preventable if PWA has access to regular health checks and sun-protective resources such as sunscreen, sunglasses, hats, and clothing. Additionally, the lack of melanin alters the retinal function and nerve connections to the eyes resulting in visual impairment and eventually leading to blindness especially in the absence of limited eyecare. Due to the compounding effects of their disabilities, cultural norms, and the colour of their skin, PWAs experience many forms of discrimination and stigma insomuch that they are often “left furthest behind” (United Nations, n.d). The health disparities experienced by PWA are significant, unfair, and avoidable; and their condition is often misunderstood socially and medically. Moreover, PWA is persecuted regularly due to erroneous belief systems, they encounter social exclusion, and in some severe cases, are tortured to death.
Just like you and I, PWA should have the same opportunity to reach their full health potential regardless of their socio-economic circumstances. Health is a human right, and as a future nurse, I have taken up the commitment of fighting for a fairer, more just, and equitable society. And in this instance, I have taken the opportunity to write this blog post on International Albinism Awareness Day (June 13) to create awareness on Albinism both within and outside my nursing community; so that the more informed we are, the more compelled we are to act. Therefore, as part of this awareness week, I invite you to educate yourself on Albinism and to be aware of the challenges PWA experience locally and globally, and lastly, I encourage you to join me in discouraging the use of the word “albinos” and using the term “persons with albinism” instead. #StrengthAgainstAllOdds #LeaveNoOneBehind #HealthEquity
References:
Kromberg, J., & Manga. P. (2018) Albinism in Africa: Historical, geographic, medical, genetic, and psychosocial aspects. Ebook. https://proxy.ufv.ca:2443/login?url=https://ebookcentral.proquest.com/lib/ufvca/detail.action?docID=5212818
Reimer-Kirkham, S., Astle, B., Ero, I., Imafidon, E., & Strobell, E. (2020). Mothering, albinism and human rights: The disproportionate impact of health-related stigma in Tanzania. Foundations of Science. https://doi.org/10.1007/s10699-020-09701-0
Standing Voice (n.d) Standing voice defends the rights of the people with Albinism in Africa. Standing Voice https://www.standingvoice.org/
United Nations (n.d) International Awareness Day, June 13th. United Nations https://www.un.org/en/observances/albinism-day