Iby Ikotidem was used to being the life of the party. She loved fashion and jewellery, had a multitude of friends and a full social calendar, often organising events in the US state of New Jersey, where she has lived with her husband and two children for the past 28 years.
“I was a showstopper,” she said.
But all that was brought to an end shortly after the first patch of dry skin appeared on her knee about 12 years ago, around the time her real estate business folded.
She thought little of it until it rapidly spread all over her body, except her face.
Following a series of medical tests, she was diagnosed with acute psoriasis, an autoimmune disease that causes skin cells to build up and form scales and itchy, dry patches.
‘Mirror was my enemy’
Even when she wore long-sleeve blouses and maxi skirts to cover up the sight and stop people from staring, her condition still drew attention wherever she went.
Sometimes when she got up from a chair, people exclaimed in shock, wondering where the “dust” on the floor had suddenly appeared from.
“I hated looking at myself. The mirror was my enemy,” she said
Soon, the stigmatisation began.
Mrs Ikotidiem recalls a particularly painful incident when she was among the weekend guests at a party in her friend’s house – she was given a mattress on the floor in the basement while everyone else retired to guest bedrooms upstairs.
“I sat on the floor, crying,” she said.
Mrs Ikotidiem soon became a recluse, shaved her hair – and was on a downward spiral until her 12-year-old daughter told her: “Mummy, you’re my hero. Please, don’t allow this sickness take you down.'”
Mrs Ikotidem said: “That dissolved every thought of suicide I had.”
The year after her diagnosis, her children were invited to join a group of young people in the US from her home state of Akwa Ibom, who would volunteer for charity work there.
Her son, Anthony, then about 15 years old, insisted that his mother accompany him. Reluctantly, she agreed.
They visited a number of orphanages – trips which were covered on local television.
While having breakfast in the hotel one morning, Mrs Ikotidem was approached by an old schoolmate who praised her and the youths for their work and suggested they extend their charity to leprosy colonies in the state.
“I said: ‘What! Is there still leprosy in Nigeria?'” Mrs Ikotidem said. “It was my first time of knowing that there was still leprosy in the world.”
Despite its elimination as a global health concern, leprosy is still prevalent in Nigeria, with more than 3,500 cases diagnosed each year, according to the country’s Centre for Disease Control.
The bacterial disease can be cured if diagnosed and treated early but if left untreated, it can cause severe damage to hands and feet, and even paralysis and blindness.
Some parents were initially hesitant when Mrs Ikotidem mentioned going to the Ekpene Obom Leprosy Hospital but they eventually all accompanied her – a visit that changed her life.
Like many leprosy hospitals around Nigeria, Ekpene Obom also provides accommodation for patients who can no longer return to their original communities owing to stigmatisation.
Even after they are cured from the disease that is treatable within six to 12 months of a course of antibiotics, they remain there with their families, their children attending school also within the premises.
Mrs Ikotidem told the residents and patients that she understood their plight.
“I knew what it was to be abandoned, to be stared at,” she said.
Sold her jewellery
Over the past decade, Mrs Ikotidem has made caring for leprosy patients her life’s mission.
Through Hope’s Door, a foundation she set up, she has focused her work so far on three colonies in southern and northern Nigeria.
Among other assistance, she provides them with special shoes, crutches, and wheelchairs. She supplies their children with stationery for school. She renovates their residential areas.
“You need to see some of the mattresses they used, you wouldn’t even let your dog sleep on it,” she said.
With limited funding from a government that has many other public health priorities, leprosy colonies in Nigeria tend to depend mostly on international charities, such as The Leprosy Mission.
“When they have any problem, they call me, not the government,” Mrs Ikotidem said, who funded her initial projects by selling her precious jewellery before hosting fundraising events and reaching out to friends.
Her next big project is to help the residents of the colonies become less dependent, by providing them with seedlings and tools for farming on their land.
“I go to bed thinking about this community and wake up thinking about them,” Mrs Ikotidem said.
“In psoriasis, I found my mission, and in my mission, I found my healing.”