- ’How we lost siblings to menace’
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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.”
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.”
