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Waiting to die, aided to live

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By Alick Ponje:

USED TO STRUGGLE WITH WOUNDS — London

Jawadu London is certain he would not have lived beyond the beginning of this year.

As physical attacks on persons with albinism heightened in Malawi’s Eastern Region districts of Mangochi and Machinga, a wave of fear, sparked by the certainty of death in his condition, engulfed the 40-year-old man.

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“I know someone from Chilipa [in Mangochi] who died from the same condition that I had,” London, from Mbapi Village, Traditional Authority Nankumba, in the district, recalls disconsolately.

For over ten years, two leaking wounds on his ear and his back troubled him beyond measure. They produced a bad smell that often forced him to stay away from his friends.

Traces of blood and water seldom dried on his body.

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“It was one of the biggest discomforts of my life. While the pain was not much, you can just imagine life with wounds that seem to have no cure, leaking wounds,” London says.

Elsewhere, others with his skin type were living in fear as they continued being targeted by killers who sought their body tissues for rituals which, perhaps by their very nature, remain a mystery.

It was not his biggest fear. He would sufficiently deal with anyone attempting to attack him.

“There was a time life did not matter at all. Death was a sure reality,” London explains.

The genetic disorder that makes him unable to produce melanin, the natural pigment that gives colour to hair, skin and eyes and protects against ultraviolet radiation, is putting many other at risk.

It kills at least 40 percent of persons with the condition.

The poor, like London, who cannot afford to apply and reapply sunscreen to their skin, protective sunglasses, hats and clothing when they go outdoor, are the biggest victims.

London admits that he was aided to live at a time he saw death looming.

“That we are susceptible to skin cancer is not news but, then, there is no joy in dying. That is why when I got treated, I saw another life growing in me. It was like I had been raised from the dead,” he reminisces.

Now, having been operated on, a monster that attacked his life for over a decade is gone, leaving him with bliss and gratitude. Only a few have had such an experience.

A condition that seems helpless to some was finally eradicated, turning his soft skin into a glowing smooth casing that he now jealously guards.

HOPEFUL – Ali holds her son with albinism

A clinical officer at Mangochi District Health Office, Paul Kanyang’ama, states that certain levels of skin cancers in persons with albinism are treatable.

London’s condition was one of them. Known as precancerous lesions, the dermatological growths are, however, at an increased risk of developing into skin cancer.

“But once they are treated early, the threat is reduced,” Kanyang’ama says. “Precancerous conditions of the skin are often without associated pain or discomfort.”

In Mangochi and Machinga, medical experts such as dermatologists are working with the Association of Persons with Albinism (Apam)—supported by an international organisation, Standing Voice, which defends the rights of marginalised groups—to bring comfort to these people.

They are being provided with sunscreen lotion, protective hats and health education about their skin condition.

“We go to hard-to-reach areas where we deliver outreach skin cancer prevention and treatment tools for people with albinism. Those with complicated conditions are referred to district or central hospitals for surgery,” Kanyang’ama says.

Having been cured of his precancerous condition, London has joined those fighting that persons with albinism should be protected from any harm.

He is bright and breezy as he goes around Mangochi, alerting those with the skin condition as his on opportunities that target them.

“When you have been saved, it is good to let others get saved too. I know that a lot of attention is being paid to physical attacks which we face. But our health is important too,” London says.

So as the sun beats down the hot lakeshore district, he ensures he says something to parents who have children with albinism and older persons with albinism about how they can protect themselves too.

At school, children with the condition need to be allowed to sit at the front of the class, in the middle, so that they can easily see writings or drawings on the board, London says.

He further implores schoolteachers to let learners with albinism wear their hats indoors to help protect their eyes from bright light and that they should be given their own books to read so that they can hold them closer to their eyes.

He finds a lot of satisfaction in the crusade.

MASSAH — We need to provide preventive measures

Apam national coordinator, Boniface Massah, pictures a moment when every person with albinism in Malawi will have the ultimate care and protection.

“Many people with albinism have never been reached with services that protect and empower them. However, in Mangochi, over 20 people have been treated of skin cancer,” he says.

More than 230 others have been reached with various products and services.

But, against the national average of 8,500 persons with albinism, such statistics do not provide adequate reason for celebration as thousands of others with the condition continue to be passed over.

“So many people with albinism in other districts are suffering and we still have a lot of cases of people dying from skin cancer. It is important that others are reached with the services that are being provided in Mangochi and Machinga,” Massah prays.

That is something that his association has been fighting for for years.

He also wants stakeholders to move beyond just the provision of sunscreen lotion.

“We need to provide prevention measures to skin cancer. We are glad that the Ministry of Health has been very supportive in this cause.

“We are also testing the structure of the ministry to see whether it can respond to the needs of people with albinism in terms of provision of healthcare,” Massah says.

Should that prove to work efficiently, Shamima Ali, a mother-of-two, will be one of the happiest parents in Mangochi.

Her second-born one-year-and-four-months-old son with albinism, Jazira Sanudi, faces many risks associated with his skin condition.

As he occasionally squints in the sun, she cuddles him softly, staring at his smooth skin that she always tries to keep in perfect condition but fears will not be the same as the toddler increases his movements within and outside his home.

“The best way of caring for his skin is to regularly apply sunscreen lotion to it. I hope the lotion will always be available for my son,” Ali says.

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