The Anguish of Okegbala Leper Colony
Just a few meters to the entrance of the medical center which serves as a government referral center for tuberculosis and leprosy, a pitiable sight assails one and for even the strong hearted, it evokes tears. An elderly woman wearing tatters for clothes pleads for mercy, even as she grovels on the ground. A closer […]
Just a few meters to the entrance of the medical center which serves as a government referral center for tuberculosis and leprosy, a pitiable sight assails one and for even the strong hearted, it evokes tears. An elderly woman wearing tatters for clothes pleads for mercy, even as she grovels on the ground. A closer look reveals that she is a leper. With gnarled hands, stumped legs, sightless eyes and a blackened face, she begs with a faint voice for a stipend. For a bed, she lies on debris and dirt. She cuts a vivid picture of intense human agony and suffering. Even when one drops a token in her rust coated begging dish, the tears cannot stop flowing.
Samuel Abiodun, the chief administrative officer of the Okegbala leprosarium, says sights like that are not rare for people like them who have no other option, but to live in the midst of the lepers. He equally adds that although the prevalence of leprosy in the region has reduced greatly, the ravaging effects are all too vivid to be seen by all. He gives a brief history of the leprosarium and host community and how both came to being.
“Leprosy services started at the former Ilorin-Kabba province of the old northern region. It was with the vision of providing spiritual and physical succor to a rejected set of people, the leprosy patients. It was also aimed at eradicating the disease. It was at a SIM dispensary that two female missionaries, Miss Thomson and Miss Lang began caring for some patients in 1941. By 1943, the population of those afflicted by the disease had grown steadily. With this also grew the hostility of the immediate community towards them. The patients were subsequently divided into two groups. Twelve patients were taken from here to Illofa under the care of Dr and Mrs Herbold. The remaining remained at Iwele-Egbe until 1945 when they were resettled at Ejiba beside the Oyi river under the care of Dr Morris. As the population grew, the hostility of the host community equally grew. Finally on the 30th of August, 1950, a settlement of 26 leprosy patients were moved from Illofa to its current location in Omu-aran, which was later nicknamed OKEIGBALA, which literally means mount of salvation in Yoruba, to reflect its purpose. The community has grown steadily since then,” he says.
He continues: “initially, patients were not mandated to pay any fees for treatment and at the end of their treatment, patients were even given hoes and other farming implements to commence an agrarian life, that is, for those who could still use their limbs. For majority of them who feared the stigmatization of going back to their former communities, they simply stayed put here in Okegbala instead of going home to their families. That is why today, the community has grown in leaps and bounds, with three distinct sub communities of lepers presently in Okegbala today. The communities are Odofin Aiyekale, Alabe and Aba Oloruntele.”
A troubled historydoctor and the administrator, wards, stores and treatment rooms. By 1956, two separate wards-18 beds each and a 4 bed isolation, a theatre, laboratory and administrative blocks were built. Since that period no other new structures have been erected. According to administrative records, by 1968, the resident doctor had left in frustration, while clinical work was mainly restricted to irregular visits by two doctors from Egbe; Drs Cummins and Campion and a few support staff. At that point, the limited government support was withdrawn thereby drawing the center into a ‘dark age.’
By 1991, the Leprosy Mission International, TLM came on board to rescue the center from its rapid slide. They renovated dilapidated structures, built mini structures to cater for the needs of the staff, re trained the support staff, re opened the hitherto closed community primary school and in a rare move, employed a full time resident doctor. So, life returned to the center or so it looked like!
The Kwara state government apparently not to be left behind in the tide of change, subsequently designated the center as the state referral center for tuberculosis and leprosy and over the years, it has continued to serve that purpose not only for the state but for others like Ondo, Oyo, Ekiti, Osun and Kogi states. The administration officer adds that the hospital has also been rendering general surgical and medical services including maternal and child healthcare, rehabilitation services and specialist eye care to the general population in order to raise extra revenue to support the leprosy patients and pay the support staff. “The hospital only continues to survive due to the magnanimity of some well meaning Nigerians, individuals and corporate outfits who provide us with food items, clothing, beddings, drugs and medical consumables but of course these are really grossly insufficient,’ Abiodun laments.
A ravaged community
The lepers live in abject squalor and penury. The houses wear the look of a war-torn community. Some of the lepers peep through cracks in the walls of the dilapidated structures. The bolder ones crawl out of the houses to feed their bleary and pained eyes at visitors who visit their community. Findings reveal that even despite their low estate, they guard their abode fiercely and with pride.
Elder Julius Fabunmi, the liaison officer between the leper colony and the leprosarium, paints an abject picture of the plight of the lepers. “Many of them cannot go home as a result of the stigmatization they may face from their relatives, even though they have been cured of the ailment. Here in the community, they live like animals without the benefit of the most basic form of utilities. They have to fend for themselves if they are to survive hunger. Many of them have to go to Omu Aran highway on a daily basis to beg for alms from sympathetic motorists. Many have been knocked down by vehicles in the strife to earn a little money to feed. Those who are too proud to beg like their counterparts, will have to go to the farms and work even with their gnarled digits and amputated limbs. The hospital cannot do much for them except offer a bit of medical assistance to them when they need such. The lepers here are really suffering,” he says.
Samuel Olarenwaju is the community leader of Aiyekale, one of the sub communities, and despite his advanced age of 75 years and the debilitating after effects of treated leprosy he still retains vigor unmatched by his healthy counterparts. He says that the government has abandoned them to their fate, even as they continue to grapple with daily ordeals of survival amidst harsh conditions. He notes: “we have appealed time without number to the authorities to come to our aid. Ebin pawa (we are dying of hunger.) When the politicians need us, they always come down here to solicit our votes. They come with numerous promises, and these they never fulfill, only for them to come again during election periods to canvass for votes. They are heartless. The hospital staff is trying their best but this is not enough. Here, we have no basic infrastructure like potable water or electricity. We live in darkness. Our houses are broken down as you can see. Many of us have to go as far as Omu Aran to beg for alms to feed. They risk their lives just to get N100 daily in alms. We still have to pay for the most basic drugs at times, as the hospital cannot afford to give us everything.”
At Aba Oloruntele, the cry is even more potent. Elijah Ayodele, the community head in the company of his deputies, Samuel Asahaolu, Adewunmi Tijani and Florence Ayeni, say that unless the relevant authorities come to their aid, they would start dying in droves. “Our suffering cannot be quantified. We cannot feed. There is absolutely no means of getting food regularly. The little we get in alms is not enough to sustain us. We fear that very soon, we may start dying of hunger if people do not come to our aid,” he announces.
He is particularly peeved that while other state governments like the Ondo state administration, is supporting the leper colonies in their midst with monthly stipends, the Kwara state government is unconcerned about their plight. He flares: “in Ondo State, lepers are given N8000 monthly for their upkeep. Why can’t this be replicated here. Or are they waiting for us to die first before coming to our aid?
Sixty year old Taibatu Agbeke Kokolowo, another community head, says that government should ensure that apart from providing welfare packages for the lepers, comprehensive treatment should also be given to them free of charge. She says that it is dreadful to note that the lepers still have to pay for medical expenses with the little they earn via begging.
A blooming school in the midst of pain
In the community, educational activities go on ironically. Many of the lepers have children and wards at the ECWA Community School. Interestingly, its lush and colorful look, thanks to the magnanimity of TLM, puts it in sharp contrast to the somber appearance of the community. The kids in their boisterous best are seen moving excitedly around the vast premises, even as the teachers take a brief reprieve from work.
Pastor S.O Afolayan is the headmaster of the school. He says that the school has 51 pupils, 14 teachers and one non teaching staff, and that the school has been in existence since 1976. “The performance of the children is very impressive. Most of them are brilliant. We thank TLM that has been supporting us with teaching materials. The government is trying its best but it is not enough. Initially, we had the problem of retaining our support staff many of whom were scared of contracting the disease but with sensitization and pleas on my part, we have crossed that bridge and many of them are willing to stay for the benefit of the children,” he enthuses.
He proudly introduces one of his staff, pregnant Mrs Olajide Olajumoke whom he says lives in the leper colony, despite the stigmatization attached to the ailment. Olajumoke says that she married and raised kids while living amongst the lepers and is presently carrying another baby. She says she has never once suffered any skin ailment even, despite the fact that she eats and sleeps in their midst. “Initially, of course, the fear was there , but I have come to realize that God controls every aspect of human affairs. The stigmatization from my experience is really uncalled for,” she says.
Leprosy is not as bad as people view it…resident doctor
The resident doctor, Femi Olatunji, says that the perception of people towards the ailment is rather more sordid than required. He gives an insight into the disease.
“Mycobacterium Leprae is the bacterium that causes leprosy. Now comes the pertinent question, is leprosy infectious? No. There are three reasons for this: the bacterium is very slow in dividing when it enters the body. It takes about 11 days to divide into two. Most of us have body defences that can recognize and get rid of bacteria. That is why only a a few people can develop leprosy. Ninety nine percent of people cannot contact the ailment. Also, only about 20 percent of patients are infectious. And finally, ALL patients who have completed their treatment are no longer infectious or considered dangerous for the society,” he says.
On the mode of treatment in Okegbala, he has this to say, “patients are now treated with a combination of drugs called multi drug therapy, MDT. The treatment is given free to all patients by WHO through the federal and state ministries of health. Dapsone, DDS was initially used. MDT still contains dapsone but has rifampicin and clofazimine added. This means that patients no longer need to take treatments for a long period as when it was a monotherapy. Those with fewer bacteria take two drugs for six months while those with more bacteria take three drugs for one year. After this length of time, the patient is free of leprosy. All those in the community in Okegbala have gone through this treatment and are no longer infectious. At present we only have three patients, with us and they are undergoing treatment.
His colleague, Dr Kayode Ajayi, who is in charge of Prevention of Disabilities, POD department of the center, says that their greatest medical challenge is to ensure that people treated do not leave the center in worse shape physically than when they are admitted. “All problems associated with leprosy are based on nerve damage. If you are worse physically after treatment then to me the treatment is not totally successful. The nerve damage at times leads to auto amputation whereby parts of their limbs fall off and in some cases, intense bone decay. There is also chronic infection of the skin and nerves which is the basis of the stigmatization they suffer from the society. Because of the pitiable environment they live, they also suffer rat bites which amputate them further. Older cases of over 30 years are still re admitted due to complications arising from disabilities.”
TLM’s declining support
Femi Opadokun is the programme officer of TLM in charge of Okegbala and he laments the organization is presently undergoing financial challenges and so, cannot offer the same level of support it had offered over the years to the institution. “Presently, we are undergoing financial constraints at TLM. Apart from being the programme officer here, I am equally the socio economic officer and equally my own driver. That goes to show you that things are not as rosy with TLM as it was before. But we will still support the activities here in Okegbala to a great extent and within our limited resources. Don’t forget we have commitments in other communities in the state like Patigi, Karuma, Eleyin and Bodesadu. We cannot abandon these also. But our plans for the community remain the same as the initial ones that is a world without leprosy despite the economic crunch we are facing. We aim to see people now do things for themselves. We have set up workshops and two cooperatives for the lepers where they can now access funds for themselves. We have also secured a loan from Dewan Foundation, India, to buy the necessary structures we need to bring succour to these people. But it pains us that the initial plans which was to see us a supporter for the state government has been jettisoned as we now play the primary role while government supports…”
A mount of salvation?
Okegbala leprosarium faces numerous challenges at present, according to its authorities. The obstacles are mainly financial, of course. Currently the TLM support has reduced drastically with the issuance of a meager N16,000 monthly, for the treatment of people afflicted with leprosy, and a further N83,000 stipend to pay some support staff. The responsibility of paying the resident doctor now rests squarely on the depleting incomes, of the hospital. Government grant to the institution for over 10 years has remained N100,000 monthly. As a result of the dearth of funds, there are no ultra sound machines to aid the treatment of patients while the existing theatre and surgical facilities are in need of an urgent overhaul. Facilities for reconstructive surgery for patients passing through the OPD is virtually nonexistent as the completion of the OPD has been on hold for over five years after its construction was first muted
“We are faced with many challenges. The government should increase its subvention to us, the present amount is grossly inadequate to cater for our needs. We are struggling with low staff morale and this is beginning to take its toll on our services,” Abiodun laments.
The State Control Officer For Leprosy Prevention and Treatment, who oversees about 16 local government areas of the state, Dr Adeoti, initially agreed to a meeting in order to speak on the actions the government is taking to bring succour to people living with leprosy in the state, and the Okegbala leprosarium, in particular. However, in an apparent volte face, the government official refused to pick the reporter’s calls when the time for interaction arrived. A subsequent attempt to meet with other state health officials was rebuffed through a bureaucratic maze.
For the leprous denizens of Okegbala though, except the government or philanthropic outfits, or perhaps divine intervention comes their way to offer a new lease of life, the much sought after ‘salvation’ on the mount may be a mirage after all, even as they continue to battle with the debilitating pangs of hunger and neglect.