the theme for this year’s International Albinism Awareness Day highlights the achievements of people with albinism around the world to encourage that people with albinism can defy all odds and celebrate how people with albinism worldwide meet and exceed expectations in all domains of life.
is a rare, non-contagious, genetically inherited condition resulting in lack of pigmentation (
) in the hair, skin, and eyes, causing vulnerability to the sun and bright light since birth. The condition may lead to visual impairment and skin cancer. There is no cure for albinism.
The process of diagnosing albinism most often involves physical examination, discussion about skin and hair pigmentation changes, examination of the eyes by an expert (ophthalmologist) and comparing the individual’s coloration with that of the family members. But the most reliable way to diagnose albinism is with genetic testing.
Health Challenges of People with Abinism
The majority of people with albinism die from skin cancer between 30 and 40 years of age due to inaccessibility to their right to health including regular health checks, sunscreen, sunglasses and sun-protective clothing.
Consequently, in the domain of development measures, persons with albinism are among those left furthest behind the need to be targeted for human rights interventions in the manner envisioned by the Sustainable Development Goals.
Albinism and Human Rights
People with albinism face multiple forms of discrimination worldwide as the physical appearance of persons with albinism is often object of erroneous beliefs and myths influenced by superstition, which foster their marginalization and social exclusion leading to various forms of stigma and discrimination.
The UN Member States continue their efforts to protect and preserve the rights of persons with albinism to life, dignity and security, as well as their right not to be subject to torture and cruel, inhuman or degrading treatment or punishment to continue their efforts to ensure equal access for persons with albinism to employment, education, justice and the enjoyment of the highest attainable standard of health.
Albinism – Statistics
- The genetic condition is seen in 1 out of 17,000 people worldwide
- Albinism gene can survive up to 7 generations
- In the US, one in 8,000 to 20,000 people has some type of albinism
References :
- Information Bulletin – What is Albinism? – (https://www.albinism.org/information-bulletin-what-is-albinism/)
- People with Albinism Form First Ever Global Alliance – (https://www.hrw.org/news/2020/01/28/people-albinism-form-first-ever-global-alliance)
Source: Medindia
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