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Fiji albinism project: raising awareness and destigmatizing albinism in Fiji
British Journal of Dermatology ; 185(Supplement 1):65, 2021.
Article in English | EMBASE | ID: covidwho-2286529
ABSTRACT
In 2020, there were reports of people with albinism being branded as 'Corona' and 'COVID-19', using individuals as scapegoats and further ostracizing them from communities. People with albinism are vulnerable to human rights' violations and suffer with skin and eye health. Albinism is increasingly recognized in the Pacific Region, particularly in the Polynesian community in Fiji, Samoa, Vanuatu and Tuvalu. A register has been created for Fijians with albinism, with the objective of understanding the scale and health needs of the population. In 2014, The Fiji Albinism Project was established through charity funding in partnership with the Fiji Ministry of Health. The aim is to improve the quality of life of people living with albinism in Fiji. Proformas are completed by Fijians with albinism and their details are collated into an Excel spreadsheet, including name, gender, date of birth, ethnicity, contact details, address, nearest health centre, school, date of entry and additional comments. The database currently holds the details of 172 people with albinism (aged 9 months-77 years), with 161 self-reporting as iTaukei. There are 88 females and 82 males registered (two do not have gender documented). Sixty-four participants are < 18 years of age. Basal and squamous cell carcinomas have been seen among adults, with one incidence of clinical Bowen disease in a child. Similar numbers of people attended the national skin clinic in 2020 vs. nonpandemic times. However, uptake of outreach clinics was reduced and fewer people with albinism are collecting free sunscreen. Owing to the COVID-19 pandemic, the first virtual International Albinism Awareness Day was held in 2020, with participants from Fiji. In 2020, a 5-year National Strategic Plan for Dermatology, Leprosy and Albinism was submitted and reviewed by the Minister of Health and Permanent Secretary of Health in Fiji. The plan includes proposals for continued free sunscreen and formalizing of referral pathways to Tamavua Twomey Hospital and The Pacific Eye Institute. This incorporation of albinism care within the Ministry of Health and Ministry of Education provides a model for other pacific islands and developing countries to follow.
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Full text: Available Collection: Databases of international organizations Database: EMBASE Language: English Journal: British Journal of Dermatology Year: 2021 Document Type: Article

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Full text: Available Collection: Databases of international organizations Database: EMBASE Language: English Journal: British Journal of Dermatology Year: 2021 Document Type: Article