Individuals with albinism within the MENA area combat for his or her rights

June 13th is International Albinism Awareness Day, which affects a genetic disease that is poorly understood in the Middle East and North Africa. Activists hope that greater awareness of the disorder will result in improved tracking, support, and treatment.

Albinism comes in a variety of forms and is most commonly found in the skin, face, and eyes, where the body cannot make enough melanin, a pigment that creates color and protects from the sun’s rays.

Ikponwosa Ero, the United Nations independent expert on the exercise of human rights by people with albinism, comments in a 2019 report on the lack of information about the congenital disorder in the region.

“The independent expert noted a significant lack of data on people with albinism in the Middle East and North Africa. Only two stakeholders have contributed, 107 namely the Islamic Republic of Iran and Jordan, ”she writes.

However, none of the countries keep official statistics on the number of people with the disease.

Ero points to prejudices that people with this disorder suffer in the MENA region, including “social barriers to marriage, an institution that facilitates rights and privileges; [lack of] Access to employment; and social exclusion related to the physical appearance of those with albinism, especially girls. “

Children in the region are particularly hard hit, both from bullying and from a lack of educational opportunities.

“Adequate school accommodation … is difficult to come by, mainly because of the cost,” she adds.

Ero writes in its Recommendations for the Region: “In the face of the lack of information available, the Independent Expert emphasizes the need for governments and stakeholders in the region to focus on raising awareness and promoting public knowledge about albinism and providing reasonable accommodation for people with albinism in school and at work. “

Activists in the area are fighting to raise awareness of the plight of people with albinism and to create a community that will serve as a support group and mitigate the lack of data.

Abeer Danish, a mother of one daughter with the disease living in Qatar, is struggling to provide her child with the housing they need to do well in school.

“The main problem is the pigmentation in your eye; she can’t see like a normal child, ”Danish told The Media Line. “It is very difficult for them to read and write in the right place. …

“I looked for help for them, but unfortunately the staff in the schools in Qatar are not trained in dealing with children with albinism because there are so few cases,” she added. “My priority is to get them to the US or Canada where there are albinism communities, but my visa applications have been denied.”

The climate in the Middle East poses particular difficulties for people with extreme sensitivity to light and an above-average risk of skin cancer.

“The weather here is a problem. It’s just too hot with 40 degrees Celsius [104 degrees Fahrenheit], and it should reach 50 degrees Celsius [122 Fahrenheit] next week, ”said Danish. “She can’t go out because of her skin problem.”

In Israel, too, Zohar Sade, 25, says the weather is problematic for people with albinism.

“When you go out there will always be a risk, so wear long pants with sleeves,” she told The Media Line. “I like to go to the beach, but I can’t. I also can’t go out when the sun is shining at its peak. “
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Sade also notes a lack of information about albinism in Israel.

“I don’t think there’s any stigma here because there’s not a lot of awareness,” she said, adding that a lot of people go online for support.

“We’re kind of a community,” she says. “We have a Facebook group and a lot of parents ask what to do with their child.”

Eliran Golan, CEO and one of the founders of Albi – The Israel Albinism Association, tries to make things easier.

“I had a hard time finding information about the needs of people with albinism. Parents need to know their rights for having a child with albinism, ”he told The Media Line. “I have seen that an association is needed to both gather information and rights in one place and to find a single point of contact for the community.”

Golan and six other parents founded Albi two years ago. Golan, 40, has albinism, as does his 10-month-old daughter Ariel.

The Albi Association plans to change the law to allow the National Insurance Institute, Israel’s social security agency, to recognize the condition for disability benefits. Currently, only the visually impaired are eligible for financial assistance.

“People with albinism have more problems than just their eyesight. They have fewer job prospects because they can’t go outside, ”Golan said.

Albi is also trying to change the way Israel tests for photophobia (discomfort or pain in the eyes due to exposure to light or the presence of actual physical sensitivity of the eyes), which can start as early as 3 years old when children can talk about what they see . The tests are currently taking place in a dark room, but Albi would like them to be done under normal, everyday conditions.

Golan said he didn’t realize he was different from other people until he was 6 or 7 years old and started school. Children used to call him names like “Casper”, “Geist” and “Milch”.

“Children can be mean. My nature is that of a fighter, but after a few years of molesting and physically fighting people who told you mean things, I realized that I can’t change people by force, so I decided to go my ways to change and ignore people who are joking, “he said.

“I think after ignoring it for a while… I realized that I had to accept myself in order for others to accept me. In order to change other people’s perception, I had to change my view of things, ”Golan said.

Sometimes, often out of ignorance, people would come up to him thinking he was the famous Israeli singer Eli Luzon, who is albino, or his relative.

“Some people even ask me to sing his songs. It was offensive at first, ”said Golan. “But after I changed my view of things, it got fun for me, I even sang his song. Humor became a means of dealing with people’s reactions. “

Knowing what it is like to grow up with albinism, Golan worries about his daughter but also hopes that her experience will be easier than his.

“I hope my daughter is fine, that she has lots of friends and that she is not bullied too often at school,” he said.

“I think it’s a lot easier socially now,” he continued. “I am grateful to the person who invented Elsa [from the Disney movie Frozen]who has very white, blonde hair. Thanks to her, people want hair like her, like my daughter. “

In terms of health, Golan fears that his daughter will see worse than his. Although he is legally blind, he says he has about 10% eyesight.

“Not much to see, but you can do it,” he said. “I can use public transport, sometimes I ride my bike. … I can do almost everything apart from driving a car. “

Although albinism comes with its challenges, the Golan also regards it as a blessing.

“Lots of people want to be special; they dye their hair or get a tattoo to differentiate themselves, ”he said. “But we don’t need to do anything. We were born special.

“It’s a process that you have to go through. Then you realize that being angelic is a gift, ”said Golan.

A conference will be held in Israel on July 7th to officially inaugurate the country’s first one-stop medical facility for people with albinism.

The program started in January at the Tel Aviv Sourasky Medical Center. While there are still separate clinics for various conditions such as dermatology and ophthalmology, practices for people with albinism will work together. The facility will also collect data on people with albinism.

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