眼皮肤白化病(OCA)是遗传传播的。在本文中,我们主张将这种疾病纳入WHO的NTD清单。OCA2型是撒哈拉以南非洲最常见的白化病,喀麦隆的Bamileke患病率为7900人中的1人,南非3900人中有1人,尼日利亚伊博斯人中有1100人中有1人,相比之下,非洲裔美国人的患病率为1/10,000,白人美国人和欧洲人的患病率为1/36,000。与眼科方面相关的医疗问题(视力不佳,屈光不正,眼球震颤,畏光)和白化病的皮肤病学方面(对太阳紫外线的敏感性和皮肤癌的发展)是众所周知的。然而,对于撒哈拉以南非洲地区的白化病患者来说,他们的管理往往是一个挑战,因为他们的经济负担和难以获得医疗专家。在许多非洲国家,患有白化病的人也经常是社会的主体,文化,medical,道德和经济歧视,这会限制他们接受教育的机会,就业和社区生活。他们被认为是“非洲白人”,中介和不完整,与生俱来的善与恶的力量。这种特殊性使患有白化病的人成为肢解和/或仪式攻击的目标,目的是利用他们的身体部位来准备护身符以带来好运,健康或繁荣。2013年6月13日,由于加拿大非政府组织在同一阳光下和非洲白化病协会的游说,包括教科文组织和世界卫生组织(WHO)在内的联合国机构作出了回应,并投票通过了解决歧视和袭击问题的决议。此后,该日期已成为国际白化病意识日,每年都以不同的主题庆祝,并产生巨大的活力和影响,尤其是法国人,撒哈拉以南非洲的英语和葡萄牙语白化病协会。2015年,人权理事会设立了白化病独立专家的职位,以更好地收集和分析世界各地白化病患者的权利数据。尤其是在发生仪式攻击的国家。因此,白化病协会和当局收集的数据直接提交给联合国人权理事会。尽管国际上对白化病患者的袭击给予了关注,最大的威胁之一是皮肤癌,这往往会导致早逝。2022年,世卫组织启动了一个战略框架,以控制和管理被忽视的皮肤相关热带病,这是将眼皮肤白化病纳入NTD的另一个原因。尽管目前的重点仅限于传染性皮肤病,我们在此主张眼皮肤白化病在NTDs中的整合,因为撒哈拉以南非洲地区这些癌的致死性是众所周知的,并且已经在许多医学出版物中进行了研究.这里,我们建议将撒哈拉以南非洲的眼皮肤白化病归类为NTD,以帮助白化病患者获得健康,经济,社会和文化权利。
Oculocutaneous albinism (OCA) is genetically transmitted. In this paper we advocate for this disease to be included in the NTD list of the WHO. OCA type 2 is the most common form of albinism in sub-Saharan Africa, with a prevalence of 1 in 7900 among the Bamileke of Cameroon, 1 in 3900 in South Africa and 1 in 1100 among the Ibos of Nigeria, as compared to a prevalence of 1 in 10,000 among African Americans and 1 in 36,000 among White Americans and Europeans. The medical problems related to ophthalmological aspects (poor visual acuity, ametropia, nystagmus, photophobia) and dermatological aspects of albinism (sensitivity to UV rays from the sun and development of skin cancers) are well known. However, their management is often challenging for persons with albinism in sub-Saharan Africa because of their financial burden and the difficulty of accessing medical specialists. In many African countries, persons with albinism are also very often the subject of social, cultural, medical, moral and economic discrimination, which can limit their access to education, employment and community life. They are considered \'white Africans\', intermediary and incomplete, with innate powers for good and evil. This particularity has made persons with albinism the targets of mutilations and/or ritual attacks for the purposes of using their body parts in the preparation of charms to bring good luck, health or prosperity. On 13 June 2013, as a result of lobbying by the Canadian NGO Under the Same Sun and African albinism associations, United Nations bodies including UNESCO and the WHO (World Health Organization) responded and a Resolution addressing the discrimination and attacks was voted in. The date has since become International Albinism Awareness Day and is celebrated on a different theme each year with great energy and impact, especially by French, English and Portuguese speaking albinism associations across sub-Saharan Africa. In 2015 the Human Rights Council created the position of Independent Expert on Albinism to better collect and analyse data on the rights of persons with albinism around the world, and especially in countries where ritual attacks occur. The data collected by albinism associations and the authorities thus go directly to the UN Human Rights Directorate. Despite this international attention to the attacks on persons with albinism, one of the biggest threats is skin cancer, which very often leads to early death. In 2022, the WHO launched a strategic framework for the control and management of neglected skin-related neglected tropical diseases - an additional reason to include oculocutaneous albinism as an NTD. Although the focus is currently limited to dermatoses of an infectious nature, we argue here for the integration of oculocutaneous albinism among NTDs because the deadliness of these carcinomas in sub-Saharan Africa is well-known and has been examined in a number of medical publications. Here, we propose that oculocutaneous albinism in sub-Saharan Africa be classified as an NTD to help people with albinism have access to health, economic, social and cultural rights.