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Home “We feel neglected and isolated in the community,” says person with albinism.

“We feel neglected and isolated in the community,” says person with albinism.

As the world commemorate the International Albinism day, Musa Mohamed in South Sudan’s Yei River County of Central Equatoria state says they feel neglected and isolated by members of the community.

Speaking in an interview ahead of the 13thJune albinism day, Musa Mohamed regrets that most people in his residence do not associate nor share conversation with him because he is an albino.

Albinism is a rare, non-contagious, genetically inherited difference present at birth. In almost all types of albinism, both parents must carry the gene for it to be passed on, even if they do not have albinism themselves.

The condition is found in both sexes regardless of ethnicity and in all countries of the world. Albinism results in a lack of pigmentation (melanin) in the hair, skin and eyes, causing vulnerability to the sun and bright light.

As a result, almost all people with albinism are visually impaired and are prone to developing skin cancer. There is no cure for the absence of melanin that is central to albinism.

Musa revealed that he is the only son to his parents who is born as an albino despite having many brothers and sisters from his parents.

He mentions that his family has always shown him love and support which has made him not to feel isolated.

I always feel neglected and isolated because no friend would willingly accept to share with me opinion on how to go about life. it is only my parents who always encourage me not feel isolated but keep moving on with life. I am the only son to my parents born like this. The rest of my brothers and sisters are all okay. I am not worried as to why am born like this, but it is God’s plan to create people the way they look,” He explains.

Mohammed thanks his parents for sending him to school to study and now he works as professionally trained teacher earning a living.

He urges parents to treat their children equally despite being born with any form of disability for it is not the child’s fault.

The 32-year-old appeals to the community members to treat person with albinism with respect like any other human being.

In most cases children with disability or any condition are denied access to education and other basic needs because of their conditions but I want to thank my parents because they did not neglect me from opportunities and chances my other brothers were getting that is why today am a professional teacher teaching the children of this country. Though it was not easy during my school life because students were mocking me, I didn’t feel discouraged because teachers were protecting me by punishing any student who abuse me. So, the courage I had, and the support given to me by my parents and teachers helped motivate me to complete school and joined the college to train as a professional teacher. I urge people to respect and value those born with disability or person with albinism,” Musa appeals.

The father of Musa, Kuku Mohamed admitted that indeed people are not friendly to person with albinism or anyone living with disability which makes them really feel more vulnerable.

He adds some people told him his son (Musa) is a curse and they expected him to treat Musa badly, but he said, he cannot treat his own son in an inhuman manner because it is the wish of a person to be born with disability or any condition.

Kuku encourages parents to treat their children equally and avail equal opportunities no matter whether the child is born with a form of disability or not.

“For sure indeed our people here are not friendly and supportive to person with albinism and those born with disability or any condition. They are treated with injustices like they are not human beings. I want to encourage my people especially parents to treat their children equally and avail opportunities equally because it is not their wishes to be born with any condition in them,” The father advises.

The UN Independent Expert on albinism Muluka-Anne Miti-Drummondsays, on International Albinism Awareness Day, persons with albinism around the world are commemorating this special milestone under the theme “United in Making our Voices heard”.

This theme highlights the need to include persons with albinism in discussions and initiatives affecting their human rights, to ensure they enjoy the equality and protection accorded to them in international law and standards. The theme also recognizes the need for persons with albinism to work together and build partnerships to effectively tackle human rights challenges they face.

She adds persons with albinism are largely absent from positions that influence decisions affecting their lives, whether in the public and private sector, at the community level or in regional and international forums.

“This year, International Albinism Awareness Day celebrates the work of albinism groups in making their voices heard. It signals that while the struggle for more visibility and inclusion is ongoing, working in solidarity as an albinism movement will help the voices of persons with albinism to be heard,” according to the UN Independent Expert on albinism Muluka-Anne Miti-Drummond.


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