Life for people affected by leprosy has often been marred by discrimination and violence, especially in the days before a viable cure. Many people affected by leprosy were sent to communities, then referred to as colonies, where they lived among others affected by leprosy. The phrase ‘colony’ was phased out slowly, as it became prejudicial and perpetuated the lasting stigmatisation of the disease.
Soon, these little communities grew to be large, and developed into fully-fledged settlements, driven by Lepra (Belra) doctors and nurses who understood that their patients deserved to become self-supporting citizens through industry and farming, mental and recreational activities and should have a chance of marriage and to earn a fair wage. These settlements were purposely built by Lepra (Belra) and local workers to have a hospital and clinics where treatment and research took place. There was decent housing with a garden for crops to be grown, workshops for carpentry and even space for markets!
Dr Mayer, a prominent doctor based in Nigeria during this time spoke of the distribution of leprosy in the country throughout those early days:
“Leprosy is by no means evenly distributed over the country, or even amongst its people. The number of people affected by leprosy is not known, though it has been estimated as high as 90,000. It certainly cannot be fewer than 66,000 and may very well be five or six times this number.”
We recently shared a piece about Ikoli Harcourt Whyte and his life in a settlement in Nigeria. His story captured the pain and uncertainty of life with leprosy in the early 20th century. Before being able to find assistance in a settlement or a hospital, many people like Ikoli wandered aimlessly, separated from their families and without hope or help. The Nigeria of the early 1900s was a different place, with limited facilities and resources to treat people and many people, doctors included, were not able to diagnose leprosy.
“The problem of relief is no easy one to solve and so far, all that can be said is that a beginning has been made” - Dr Mayer, Nigeria.
Leprosy work in Nigeria was an uphill struggle, and in 1931 the already stressed medical service was forced to remove two permanent leprosy specialists due to a lack of funds. While leprosy was, at the time, more prevalent than almost any other known tropical illness, Nigeria was still caring for many other non-tropical illnesses and the burden was immense. Case numbers were high, especially in the Itu settlement where Ikoli Harcourt Whyte was living. The native population were afraid of the disease, and as treatment was voluntary, it was difficult to control its spread in more isolated villages and townlands, where people weren’t as easily accessible and did not travel outside of their own homes.
Dr James Kinnear Brown, a leprosy specialist based in Nigeria, wrote of the disease at the time:
“The fear of leprosy is not only general but also very intense – so much so that the native name of the disease (Opo) is seldom used, lest its repetition should cause the sickness to come upon the speaker.”
Itu was the first leprosy settlement in eastern Nigeria. It was situated along the banks of the Cross River.
“Many of them [the patients] are friendless, have been deserted, or driven out of their homes. Leprosy cancels marriage contracts. It is strongly suspected that in many places, those with leprosy are disposed of in mysterious ways, and are either poisoned or take their own lives. I have known people, in the later stages of the diseases, to ask to be buried alive.” – Dr. A.B. MacDonald, CBE
By the 1950s, Nigeria was ahead of many countries in its leprosy control activities. Dr Charles Ross, a renowned leprologist, pioneered outpatient treatment and was involved in pioneering the use of Dapsone as a new drug to cure leprosy. Patients in Itu, like Ikoli Harcourt Whyte, benefited immensely from these advancements in science and treatment.
In 1975, after decades of support from charitable organisations and Christian missionary groups, the Nigerian government finally established a National Leprosy Control Committee. The Committee aimed to reduce the number of leprosy infections in every province until transmission of the disease ceased to be a serious public health concern. They also identified the need to create leprosy awareness through education programmes for the general public and non-leprosy medical community. In 1993, Nigeria adopted the Multi-Drug Therapy (MDT) that had been successful in treating people in as little as 6 months. This was a massive move for Nigeria and decreased their cases exponentially.
Lepra provided funding, specialists and general personnel for the cause of leprosy in Nigeria for many decades. For many of those involved in the process, from locals to implanted specialists from England, there was a deep-seated sense of community spirit and a shared sense of pride. To see people, who had once been trapped in leprosy communities and hospitals for almost twenty years, now be able to leave symptom free and live ordinary lives, was the result of decades of collaboration, determination and hard work.