International Albinism Awareness Day celebrates those with rare genetic condition
WHY IN NEWS:
‘Made To Shine’ — the chosen theme for this year’s International Albinism Awareness Day — celebrates the achievements of those who have albinism
SYLLABUS COVERED: GS 3:Diseases : UN
For PRELIMS it is important to understand this genetical disorder and its prevalence. Take a note on this years Theme !
For MAINS make some effective notes on the odds people are facing in Albinism .
Those with albinism are vulnerable to sun exposure, something that increases chances of skin cancer and severe visual impairment.
- Both parents must carry the gene for their child to have the condition.
- Even though the parents carry the gene, they may not show any physical signs of the condition.
- So it is a genetical disorder .
The physical appearance of those with albinism is often conflated with erroneous beliefs and myths influenced by superstition, something that furthers marginalisation and social exclusion, leading to stigma and discrimination
HEALTH CHALLENGES PEOPLE FACE LIVING WITH ALBINISM
- CANCER : The lack of melanin means persons with albinism are highly vulnerable to developing skin cancer.
- FATALITY : In some countries, a majority of persons with albinism die from skin cancer between 30 and 40 years of age.
- RIGHT TO HEALTH : Skin cancer is highly preventable when persons with albinism enjoy their right to health.This includes access to regular health checks, sunscreen, sunglasses and sun-protective clothing.
- LESS OPPORTUNITIES : In a significant number of countries, these life-saving means are unavailable or inaccessible to them.
- VISUAL IMPAIRMENT : Due to a lack of melanin in the skin and eyes, persons with albinism often have permanent visual impairment.
- DISCRIMINATION : They are often subject to multiple and intersecting discrimination on the grounds of both disability and colour.
In some countries, those with the genetic condition have been stigmatised and accused for spreading COVID-19, something that does not have a basis in scientific fact.
Killings, attacks, bullying and discrimination continue against people with albinism.
AROUND THE WORLD :
- One out of every 17,000 people across the world have albinism
- Africa and Europe have the greatest number of those with albinism.
- In India, there are around 200,000 who have albinism.
UN RESOLUTION :
- In 2013, the United Nations Human Rights Council adopted a resolution that called for the prevention of discrimination against individuals with albinism.
- The UN General Assembly proclaimed June 13 to be International Albinism Awareness Day on December 18, 2014, with it being observed for the first time in 2015.
- Consequently, in the realm of development measures, persons with albinism have been and are among those “left furthest behind.”
- This day, hence, serves as a reminder that people with albinism continue to defy odds, overcome hurdles and face injustice with resilience.