You can’t miss the musky air of ancientness at the Elega Leprosy Colony in Abeokuta, Ogun State. Even with the newly constructed buildings within the colony, the ones with faded paint whisper tales of the distant past. The worn-out houses somewhat foreshadow the old age of the occupants, whose experiences with leprosy form the foundation for this piece. Leprosy, also known as Hansen’s disease, is as old as time, and it is one of the world’s most stigmatised diseases. Beyond the societal stigma it attracts, it often leads to deformity. FIJ’s ABIMBOLA ABATTA visited the colony, where survivors recounted personal stories and shared their pains.

When leprosy came for John Ojaowo decades ago, it did not just steal his fingers; it stole his dreams, too. Now in his 70s, he fondly recalls the past and what his life would have been if the disease had not robbed him of his musical career.

Ojaowo was born in Iwere-Ile, Oyo State. He used to be a musician. He believes he would have been in the same league as popular Yoruba musicians like King Sunny Ade and Ebenezer Obey had leprosy not happened.

He alternates between reclining and sitting straight up on the white plastic chair inside the hall as he provides answers to this reporter’s questions.

“I got here in 1973 when I heard there was free medical care. My family spent so much on traditional herbs before we learned about hospitals that catered to people affected by leprosy,” he says.

READ ALSO: INTERVIEW: ‘It’s Like a Hot Iron Being Dropped Over Your Bones Repeatedly’ — A Sickle Cell Warrior Explains a Crisis

HOW DEFORMED FINGERS TOOK HIS DREAMS

Leprosy is an infectious disease caused by Mycobacterium leprae. It often results in severe and disfiguring skin sores and nerve damage in the arms, legs and other parts of the body. Although it is curable with a multi-drug therapy regimen, early treatment is essential to prevent disability.

When Ojaowo got to the colony in search of treatment after exhausting all the options that trado-medical care could offer, leprosy had ripped off his fingers. And with his fingers went his musical career.

This is how he recalls what leprosy took away from him. He told this reporter that besides his singing, which captivated his audience, he could also play the guitar and accordion. But after leprosy came, he stopped and never returned to playing.

“What leprosy took from me makes me sad till today,” says Ojaowo.

“You know you need your fingers to play these instruments. This was way before I had the knowledge that I could have sought medical help.”

Although the leprosy-induced wounds on his hand and legs were treated and cured when he got to the colony, it was already too late for his fingers.

“Will the fingers that have been lost to leprosy grow again? No. Although I can say within me that there is no leprosy in my body anymore, there is deformity,” he says.

“If not for leprosy, I would not be in the position I am currently in. When musicians like Sunny Ade and Ebenezer Obey started singing, I was also setting out as a musician in my hometown. But when leprosy came, it all became a lost, distant, past dream.”

READ ALSO: A Mother’s Experience Raising a Child With Multiple Developmental Conditions

‘A HOME AWAY FROM HOME’

While I conversed with Ojaowo and some others at Elega, it was glaring that these aged men and women were diagnosed with leprosy at a time when the disease was associated with curses and supernatural causes, and anyone who had it was treated as an outcast.

On the bright side, Elega Leprosy Colony stretched out its warm hands to provide shelter for them.

“When I got here in 1973, I was accepted wholeheartedly. I did not pay a dime. Prior to that time, I was not into farming. But when I got here and I had lost my fingers, I had to look for a way to farm to survive,” Ojaowo recalls.

For him, Elega is his home away from home. “As we [the survivors] are here, seeing one another, we are happy with ourselves,” Ojaowo says.

It’s hard to leave the community that does not only serve as his home but also provides him and others with succour from depression. It is where they all feel truly accepted.

“I have relatives in my home town, and even if I decide to go back home, it’s not as if they will send me away. However, my heart will be filled with sadness. I can visit anyone here within the colony without fear of side talks,” he says.

He told me that the colony gave him a wife, too. He got married to a fellow survivor, and they have healthy children whose formal education was bolstered by benefactors and helpers.

“One of my children has completed the National Youth Service Corps (NYSC) programme, and my last child is currently in a polytechnic,” he tells FIJ.

The presence of a hospital, church, mosque and even primary school within the community makes it a complete home for them. One told me that the school allowed their children to acquire early education with minimal stress.

SHE HID FROM SOCIETY

Elizabeth Olanrewaju, also in her 70s, tells me that leprosy stole her booming business and she had to hide away from society.

Olanrewaju used to live in Lagos State, where she owned two big shops stocked with ready-made clothes. However, when the disease came, she sold off her goods almost for nothing and used the proceeds on traditional treatment. This was before she learned about Elega.

“In fact, I had a piece of land then, which I had to sell so I could raise more money. But nothing worked. It wasn’t until later that one of my uncles told me about this place. I was hiding in a very remote village then because of discrimination,” she says.

“I was quite young when I got here. I had just given birth to my first child. I even brought the child here then. When I came, the elderly doctor who treated me was so concerned by the fact that I was young.

“Before I knew what was happening, all my loved ones died one after the other. I was left alone in the world. I started mingling with those I met here and even got re-married here in this colony.”

READ ALSO: Second-Class Citizens: How Hospitals Treat Patients Under Osun Govt’s Health Insurance Programme

ON STIGMA & MISCONCEPTIONS

On social stigma, one of the survivors tells me that the discrimination against people affected by leprosy used to be on the high side. “But now, it has reduced,” says the survivor.

“We can go to the market, go for events. But in those days, it was so serious that people did not want to associate with anyone with leprosy.”

However, despite the perceived reduction in stigma, they sometimes find it difficult to attend events as a group.

“Whenever we need to hire a public bus for group events, some drivers often refuse. And condescendingly, they would make comments like, ‘I can’t use my vehicle to convey lepers,'” says Olanrewaju.

They think this issue could become history if they had a permanent means of transport, like a bus, to commute to such events.

READ ALSO: Despite Anti-discrimination Laws, Persons With Disabilities Are Still Subjected To Stigmatisation

‘I THOUGHT IT WAS ECZEMA‘

When Falilatu O. started developing the symptoms of leprosy, such as reddish rashes that appeared in different parts of her body, she thought it was eczema. “So, we were using herbal medicine,” she tells me.

When local herbs did not work, she consulted herbalists. But this time around, she thought a supernatural force was behind her predicament. “I had to kill an animal just because of it,” says Falilat.

“I never ate out of it. The herbalist only sprinkled the blood on my legs and hands and told me not to step outside, especially at night, because a sacrifice was to be offered on my behalf.

“I was warned not to go out because it was believed that if I came in contact with the person offering the sacrifice to the deities, it could render it ineffective.”

Still, the sacrifice did nothing to help her situation.

“When the sickness started, I had to use very thick clothes to protect my hands while cooking. Any slight burn would cause my hands to swell, and by the third day, the blisters would burst and turn into very painful wounds,” Falilat tells FIJ.

Falilat says she would later learn of the Elega clinic when the infection became more advanced. “I am grateful for the scientists who made the drugs we use. Those drugs made us better,” she says.

“A white man was the doctor when I came here. He attended to me in the old clinic out there. This was where I learned that it is an invisible germ that causes leprosy. They told us it’s not spiritual.”

While I spoke with Jimoh Ahmed, the chairman of the Integrated Dignity Economic Advancement (IDEA), an association that caters for people suffering from leprosy in the state and one of the leaders of the leprosarium at Elega, he said many people still think the disease is highly contagious.

“Those who are not enlightened about leprosy often think it is highly contagious and incurable,” Ahmed disclosed. “But we always educated them without hesitation.”

According to Ahmed, the stigmatisation of people affected by leprosy often pushes them into isolation. He also mentioned that the mistake many survivors make is not diagnosing the condition early enough.

“When we were seeking herbalists, we would have sought modern care. This disease affects the nerves. Once it causes wounds and people fail to go to the clinic on time, the wounds will turn into deformity,” he said.

DOES LEPROSY STILL EXIST?

The simple answer to the above question is yes. Earlier this year, the Nigerian Medical Association (NMA) and the National Committee on Neglected Tropical Diseases (NTDs) disclosed that Nigeria is one of the 17 countries that still report more than 1000 cases of leprosy annually.

Professor Charles Elikwu, a consultant clinical microbiologist, told this reporter that early detection and treatment of leprosy are crucial to preventing long-term complications.

“Leprosy is an infectious disease that affects the peripheral nerves. It’s caused by invisible organisms that cannot be seen with the naked eye. It is caused by a bacteria called Mycobacterium leprae. It is not hereditary; it is usually acquired,” he said.

He noted that this bacteria is an inactive one. This means it grows slowly and may not show symptoms for many years – as many as 20 to 30 years.

According to Professor Elikwu, affected people usually don’t get sensitised to it early enough. “By the time people start noticing patches of raised skin, it’s already gone too far, even at that stage.”

Some of the early signs to look out for, according to him, include discolouration of the skin and neurological signs like numbness and tingling sensations.

“These symptoms may not necessarily mean it’s leprosy, but it’s best to just go to the hospital for a proper diagnosis. People must be very observant of their health and seek medical care on time,” stated Professor Elikwu.

“Sometimes, because their sense of touch and sensation to pain, heat and the rest is compromised; it leads to secondary injuries. If the person steps on a broken bottle, for instance, they won’t feel it and won’t scream. They may have a deep cut on the sole of their foot and may not even know. The wound will get secondary infections, which may even kill the person faster.”

He also said that deformities often manifest because patients don’t seek help early enough: “When you do a test after treatment, the bacteria may no longer be present in their body, but the deformities are irreversible.

“Leprosy demands that you see a specialist. This is why we encourage widespread education. It is curable. People should know about it and seek help early.

“Somebody may have something that looks like eczema and the doctor may even think it’s eczema, thereby prescribing a cream for it. If there’s no improvement after one or two weeks, go to the teaching hospital because this is where you have specialists.

“When it is not treated early and it affects the nerves, it causes deformities. You’ll see a number of the affected with their fingers ripped off and the bridge of their noses collapsed.”

In cases of late diagnosis, the health expert stressed the need for rehabilitation. He, however, added that such rehabilitation is challenging in a country like Nigeria.

“In some advanced countries, affected persons could be sent to special hospitals for rehabilitation programmes. If the deformity affects their feet, for instance, there are special footwear that can be given to them.”

When asked whether leprosy is terminal, the health expert said it depends on the nerves it affects.

“Once the function is compromised, it can lead to death. You can say it’s terminal, but not like cancer.

“Even if deformity has set in, they can still live. The only thing is that their quality of life is affected. How much sponsorship do they get? Their general health condition is poor due to the level of complications from leprosy. However, the leprosy itself cannot really lead to death. It’s a chronic disease, which means it will run for a longer course in years.”

A CALL FOR HELP FROM GOVERNMENT

During my visit to Elega, I learned that the Ogun State Government pays survivors a monthly stipend of N10,000. It used to be less. One of them recalled that it used to be N3000 in 2003 and 15 kobo in the early days of the colony.

For this vulnerable group, the current amount is barely sufficient to mitigate the harsh impact of the high cost of living. Also, payment often comes late. 

While I was there on March 23, they told me that they received February’s stipend the previous week. While they expressed heartfelt gratitude to the government, they told me that they had been pleading for more support.

“We used to get the monthly stipends latest within the first week of a new month. But now, it could come in as late as the 20th or even 27th of another month,” one of them revealed.

“We don’t want to be noticed or remembered only during election times. We are urgently begging the government to increase our monthly stipend to help us better cope with our circumstances,” another added.

They further told me that different non-governmental organisations (NGOs) have been incredibly helpful to them, as they occasionally assist with donations and other forms of aid.