• ’How we lost siblings to menace’
• Intervention by Lagos State stems death rate
Many of the people living with albinism (PWA) are suffering and dying from skin cancer following constant and unprotected exposure to sunlight, according to health experts. Unfortunately, many of the PWAs out there have no knowledge about the damage that sunlight does to their skin. Hence they continue to walk about in it without covers, thereby predisposing themselves to having skin cancer. There are fears that the challenge may worsen if awareness about the ravaging effects of sunlight on their skin is not stepped up, INNOCENT DURU reports.
Victoria Adesanya and two of her siblings were born with albinism. They always stood out among their peers and in their community because of their very bright complexion.
As time went on, between 2011 and 2012 to be precise, one of the siblings started feeling unwell. After some unsuccessful attempts at treating the sickness, Victoria said, they decided to spiritualise the matter and called it an arrow from the enemies.
“Unfortunately,” she said, “we lost her to cancer in 2012. We didn’t have any knowledge about cancer in people with albinism then.”
Not quite long after she lost her immediate sister, her brother came up with similar challenges. “This time around,” she said, “the children searched the internet and found that there was a support he could access at Albino Foundation, Abuja.
“To enable him get the support, I went to Mrs. Josephine Omolola at Lagos State University Teaching Hospital (LASUTH), who is the head of our cluster. She even gave me a letter for my brother.
“Before we could complete the process, it was too late for him. He also passed on.”
After her brother’s demise, she said, “I started attending the meeting of people with albinism. There I discovered that it was cancer that killed my siblings and not any arrow. I learnt that the sun is our enemy and not salt as people used to say.”
Victoria herself was not spared by the menace. Four years after losing her sister, she was also diagnosed with skin cancer. But unlike her siblings, knowledge and improvement in healthcare saved her life.
“After losing my two siblings, actually, at first, I had fear but I just put my trust in God because we have an aged mother. If I should continue to fear, who will take care of her?
“So I just have my faith in God and I’m confessing that me, I will not die of cancer. There’s an improvement. There are parts of my body that are healed.
“There was a time I went through biopsy on my nose and hand. I am still taking medication, but it is improving. The treatment comes with serious pains.”
Victoria’s treatment and those of other PWAs who have survived skin cancer receiving treatment at LASUTH has been made possible by the Lagos State Government through the Lagos State Office for Disability Affairs (LASPODA).
According to the Chairman of Lagos State Association of PWAs, Tolani Ojuri, treatment of each PWA costs at least N3 million.
This intervention, he said, has helped to reduce the death rate among PWAs.
Sophia Mathew is another PWA who has lost a PWA sibling to skin cancer; an experience she described as utterly unpleasant.
“I lost my elder brother to skin cancer,” she said as she recalled his last days.
“His was a terrible tumor; a very big one,” she said with a grimace.
“There are different types of skin cancer, but his own was a deadly one. I nursed him till he died. That was in May 2020.
“At the initial stage, I was not with him. But when they noticed it was cancer, it was almost becoming late. It was already affecting his vital organs: the kidneys and all that.
“He was often going for dialysis. That was the stage at which I met him and started taking care of him.”
Continuing, she said: “It is not a good one. His wasn’t a good sight, especially when the bleeding started. It was very bad.”
Speaking of her personal experience with skin cancer, Sophia said: “I got to know about it in 2021. I just noticed a growth under my jaw. I thought it was just the way some of them come as injury, but this one started growing.”
After some months, she said, “I had to go to the hospital where they diagnosed it as skin cancer and that part of the flesh had to be cut off. I went for surgery.
“Of course, you have pains when you have such an issue. At one point, it gives this terrible odour. It is very offensive. Even you would perceive it yourself.”
Without mincing words, Sophia said it is not easy living with albinism.
“Albinism limits us,” she said.
“Personally, I like the side hustle of cooking, catering and marketing. But I cannot do them because of the sun. I know the implications. Since I have suffered it, I know what I would face.
“Although I like cooking and restaurant business, I can’t stay constantly close to fire. Yet you can’t employ people without being there to monitor them. You have to look at what they do.
“We have people who are interested in sports like football, but they can’t play it because the sun is a limitation.”
Read Also: Five famous persons who died on birthdays
Survivor’s hand amputated after selling Abuja building to treat cancer
Another survivor, Dr. Sivanus Egwu, an engineer, has not lost any sibling to skin cancer as he has none with albinism, but he had had to sell off a building he laboured hard to build just to raise money to treat the challenge which eventually claimed his hand.
“Before I noticed that I had cancer, it was already late. It was already going bad,” he said.
“I thought it was just like skin rashes and skin boils. It came up like a boil which I’d been having right from childhood.
“As a child, each time I had a boil, my father would buy antibiotics for me and after taking them, they would vanish.
“This particular one came up like that and I was taking antibiotics, trying to treat it, but it was not going.
“Sometimes it would dry up and come back again on the same spot. I would treat it again but before you know it, it would dry up and come back again on the same spot.
“I didn’t know that by that time it was already going deeper into my skin. I didn’t know it was killing the body cells.”
Subsequently, he said, he had to go for surgery.
“After that surgery, the thing dried up and came back again. I had surgery up to three times in the same place. I did it at a private hospital.
“I had done such surgeries before and the thing would heal. I had done one on my face and it healed. I did another one on my leg; it went and didn’t come back. But this one on the hand kept coming back.”
Egwu said after some tests, experts at LASUTH diagnosed the rash as being cancerous.
“I went to FMC at Abeokuta. They said the same thing and said they would do plastic surgery on it.
“Eventually, I went to Nnamdi Azikiwe University Teaching Hospital which is close to my village. There, they did the plastic surgery. It took a lot of money.
“After some time, the thing disappeared but came back again.”
Shocked by the development, Egwu went back to Nnamdi Azikiwe University Teaching Hospital. “After a lot of tests, they told me that the best thing was amputation.
“All this gulped a lot of money. At a point, I had to sell the house I had in Abuja to raise money.
“Eventually, I went to one orthopaedic specialist hospital in Oba, Anambra State where the amputation was done, because they said if I would not do the amputation, I should forget about life.
“I later went to Yaba, where they did the artificial limb.”
More PWAs relive experiences
Edema Frederick Taiwo, a teacher, is also a survivor.
He told The Nation that he knew about it some years ago “when I started feeling pains in both legs and my back.
“The one on my back, I was able to handle the operation on my own then. But the one on my leg, due to the financial situation as of last year and early this year, I was unable to meet up with the treatment.
“It was when the Lagos State Government intervened that I had the operation done.”
Also sharing his experience, Mojeed Onosanya said cancer in a person with albinism is not something that just comes instantly.
“It is an accumulation of frequent exposure to the sun. So there is something called precancerous cells. It is not actually cancer. If not taken away, it can lead to major cancer.
“What I had was a precancerous cell that must be taken off so that it would not deteriorate into a cancer itself.
“Cancer itself is more dangerous. That means it would have penetrated into different layers of the skin.
“When I saw a sign of precancerous cells, I just had to go for it.”
Asked how he got to know about the development, Mojeed, who is the public relations officer of PWA association in Lagos State, said: “Due to the advocacy we always have in our association, we are told that when you have a sore on your skin and it is more than two to three weeks without healing, you just have to raise the alarm. You need to quickly visit your dermatologist because that is a sign of cancerous cells.”
Mojeed said he was not anxious when he noticed the precancerous cells on his body. “The only thing that can lead to anxiety is when you don’t take any action and it deteriorates into a full blown cancer.
“There won’t be any anxiety if you have taken precautionary measures. But if there are no precautionary measures, anxiety will surely set in.”
He listed other challenges persons with albinism face to include low eyesight. “It’s just low eyesight, not that they are totally eye impaired. The limit of vision is low to an extent. That is one of the major challenges of a person with albinism.”
PWAs lament discrimination by society
Aside from the challenge of skin cancer, the PWAs also decried the spate of discrimination against them by the society. They frowned at being ridiculously called albino, insisting they are merely people with albinism.
Recalling his experience, Egwu said: “We face discrimination a lot, but I’ve come to live with it.
“The one that pains me most is that when we are moving, we are distracted by people who derogatorily call us afin (albino) or afin o jeyo (albino that doesn’t eat salt), and so on. These are all derogatory expressions.”
Continuing, Egwu said: “After my youth service, I have not worked for anybody. I don’t even know what salary is, because when you go out to find employment, even though you know the job very well, they feel you cannot perform and won’t employ you.
“After so many years of looking for job, I had to start something on my own. And by God’s grace, most of those people that got jobs, I am better than they are today despite the expenses on my health.
“I bought a house in Abuja. Through the work I did in Abuja, I saved money and bought a house there. But I sold it to take care of my cancer problem when I had this issue.”
Aside from the Abuja property, Egwu said: “The building my family is living in here in Lagos was built by me. I have two cars and I have a wife with five children.
“One has even travelled out of Nigeria to Canada and I sponsored the trip single-handedly. Another one is in a higher institution and three others are in secondary school.”
Also sharing his experience, Mojeed said: “When I was in school, I had a lady with whom we studied together. We moved almost everywhere together. She had a sister in the school, who went home and told their parents that the sister was going out with somebody with albinism.
“But our relationship was platonic. I actually had it in mind to going beyond that, but because of what the sister did, I jettisoned the idea.”
As part of its community awareness creation on strengthening existing Violence Against Women and Girls (VAWG)/ Sexual and Gender-Based Violence (SGBV) prevention and response structure for women and girls with disabilities, the Centre for Women’s Health and Information (CEWHIN), a non-governmental organisation based in Lagos, recently held town hall meetings across Lagos and Osun states where it educated the public about the need to shun any form of discrimination and violence against people living with disabilities, including PWAs.
The organisation has LASODA as one of its partners.
“We need to see people with disabilities as human beings. They are not abnormal. They have rights like everyone else. It is the duty of everyone to make sure we live in a world that is devoid of sexual and gender-based violence on women and girls, especially women and girls with disabilities,” Pamela Stephen, the programme officer, said.
Survivors hail Lagos govt
The survivors who spoke with The Nation applauded the Lagos State Government for always coming to their aid.
Egwu said: “The Lagos State Government has been trying for us through LASODA. They’ve been giving us Efudex. If I had used Efudex when the challenge started, maybe it wouldn’t have led to amputation.
“Efudex is very expensive. I learned that a tube that is not even up to the size of toothpaste is N140,000. How many people can afford it? But the Lagos State Government gives it to us for free.
“It’s a kind of chemotherapy skin treatment. Treating cancer is not a joke.”
Because of his unpleasant experience, Egwu said he has been educating every PWA he comes across.
He said: “If I see anybody with albinism on the road, I call and educate the person. If you must take a child with albinism outside, find an umbrella to cover her.
“The sun is our greatest enemy. We only have to find a way to adjust. And that is what we are doing by using cap, sunscreen, etc, which the Lagos State Government is providing.
“We also protect our bodies by wearing long sleeve shirts and trousers, and so on.
“Had it been I was kitting up like this since I was born, I wouldn’t have had any issue now. The sun affects us in many ways.
“I am a field man; a self-employed engineer. I am a systems engineer. I go out whether there is sun or there is no sun to at least be able to provide for my family.”
Also appreciating the Lagos State Government, Victoria advised that “parents should take care of their children with albinism from the onset. They can even go to their school to inform the teacher that they should be wearing long-sleeved shirts, be covered up and should use sunscreen.
“They should use protective hats too or umbrellas. They mustn’t play in the sun.”
On her part, Sophia said: “Thank God for LASUTH. They are always with us. At least the dermatology department always helps us.
“Everyone reading this report should do the same to stem the tide of skin cancer among PWAs. Relevant federal and state government agencies should also follow suit because prevention is cheaper and better than cure.”
‘We were losing one member monthly’
Shedding light on why PWAs are prone to skin cancer, Lagos State Chairman for Albinism Association of Nigeria, Tolani Ojuri, said it is because of the lack of melanin on our skin, and that is the protective chemical for the average human being’s skin.
He said: “Due to lack of melanin, persons with albinism are susceptible to skin cancer. In the past five years, we’ve really had cases of skin cancer. Some of them have led to death and some of them are receiving treatment at the government hospital as we speak.”
One peculiarity with skin cancer, according to him, is that it can be trapped while it is still in early stage. “The survival rate is extremely high. It is almost 100 per cent. That is why we always encourage our people to always check their skin with a dermatologist at least once every six months.
“It can even be every 90 days. But the best minimum is every six months. So that if there is any abnormality of the skin, it can be taken care of as soon as possible.”
Ojuri added that up until the second quarter of last year, “that’s about June, July, when we had our albinism awareness day, we were having an average of one person a month dying. That means one PWA that we know a month that died of skin cancer.
“The problem is, once they are down with this skin cancer, a lot of doctors, even from other people that are medical practitioners, don’t know how to handle these cancer cases. They keep on proffering all kinds of solutions to people with albinism, and in the process, the cancer cases get worse and eventually, they die.
“It’s an average of 12 per year. That is like one person every month.
“But between the third and last quarter of 2023, we have been able to stem the tide of persons with albinism dying of skin cancer.
“We got a special intervention from the Lagos State Government and that intervention took care of all our cancer patients.
“The state government picked up the bills for all our cancer patients. All persons with albinism who had cancer, they picked up their bills.
“We also moved a step further, as in they provided sunshade materials for us. They provided caps, umbrellas and sunscreens so that all these things would prevent persons with albinism from exposure to the sun.”
Corroborating his members, Ojuri said PWAs are really advised not to go out in the sun. “But if they have to, in extreme cases, use your cap, umbrella and sunscreen for protection.
“We have eight cancer patients as I speak. Two are in the hospital at the moment. Because of the various stages of cancer, some have had two surgeries between January and now. They are recuperating.
“After we had the eight approved by the governor and we hit the airwaves for appreciation, another four cancer patients showed up.”
On the average, Ojuri said, to treat one cancer patient costs about three million naira.
“Without the intervention of the state government, cancer cases would have degenerated, and maybe some of them would have died.”
Asked about the fate of non-members, Ojuri replied: “Well, the waters might be a bit difficult for those who are not our members to navigate. Because if they scale through the issue of segregation, the issue of discrimination, if they are able to scale through that, the issue of health, which is the case of skin cancer, is always difficult.
“For instance, to see a dermatologist, you need to go to a government hospital. It’s a bit difficult for somebody who is not a member of our association. They don’t even know the intervention that the Lagos government is putting in place for persons with albinism.”
