Persons with albinism still face discrimination, stigmatization, denials, and rejection from society, Newton Kwamla Katseku, Executive Director for the Ghana Association of Persons with Albinism (GAPA), has disclosed.
“People with albinism are confronted with unemployment challenges based on their health condition and not their qualifications, denial of marriage, and other health disadvantages in society,” Mr. Kasteku told the Ghana News Agency in an interview in Tema as the association marks the 2023 International Albinism Awareness Day.
International Albinism Awareness Day is celebrated annually on June 13th to celebrate the human rights of people with albinism worldwide. Albinism is a rare, non-contagious, genetically inherited difference present at birth.
Kasteku called on the government to include sun care products, dermatological, and optical services on the National Health Insurance Scheme (NHIS), mainstream albinism at all levels of the education system, and help the association obtain a reliable and accurate database of all persons with albinism in the country.
He also called on employers and the larger society to focus on the strengths and achievements of persons with albinism rather than the myths surrounding the condition.
Katseku explained that this year the international community is focusing on “Inclusion is Strength” as the global theme to create awareness and advocate for a change of attitude towards people with albinism.
He explained that albinism is a genetic condition caused by genes that affect the amount of melanin the body produces.
Adding to that, the word “albino” involves both animals, plants, and humans’ races that lack melanin, and hence, the condition that brought about the lack of pigmentation (melanin) in humans is called “albinism”.
“When it comes to the human race, one is first identified as a person before albinism is detected. So in a good context, it is preferable to say “a person with albinism and not albino,” he said.
He explained that the condition affected the hair, eyes, and entire skin, and depending on the level of pigmentation, it could include blood disorders, bruising issues, lung and kidney diseases.
“Before a child with albinism can be born, either of the two parents must be carriers. In effect, there must be a recessive and dominant gene,” he said.
Kasteku noted that people with albinism can be categorized under the disability community because of how the condition affects their full function in relation to vision impairment and skin diseases that cause body irritation and result in skin cancer.
He revealed that GAPA was visible in all 16 regions with a few districts visibility and has recorded 2,744 registered persons with albinism in Ghana this year.
He also described how the awareness rate of albinism had grown since February 2003 and commended the media for its advocacy role in demystifying the myths associated with the condition.
According to him, people with albinism usually wore protective wide hats to cover the head, sunglasses to protect the eyes, protective cloths to cover the body, and apply maximum skincare products to prevent the skin from drying and sun rays.