The Neglected

In continuation of our series of visits aimed at bringing some of the interesting healthcare interventions in Nigeria to the public, Dr. Ifeanyi Nsofor and Adaobi Ezeokoli of the EpiAFRIC team recently joined The Leprosy Mission Nigeria (TLMN) during their visit to the Leprosy Referral Hospital, Chanchaga, and Community in Kampani, Minna, Chanchaga LGA, Niger State. The visit, sponsored by TY Danjuma Foundation, included a tour of the orthopaedics workshop run by TLMN, a tour of the hospital, an interactive session with the patients in the ward, a focus group discussion with members of the Kampani Community and meetings with State Public Health Officials and TLMN officials. All names, stories and photos below are used with permission.

David looks up from the Bible he is reading as we approach his bed in the men’s ward of the Leprosy Referral Hospital in Minna, Chanchaga LGA. He smiles a little shyly and starts to put away the Bible but is quick to laugh and respond when the hospital staff greets him. He has lepromatous lesions all over his face, and his ankles and swollen feet are bound in gauze to help heal the ulcers on his skin. He uses special cushioned sandals on his feet to protect his skin from further damage. As we talk to him, it is obvious that he is in high spirits, that he is happy to be there and, that despite the difficulties he faces, he has hope. He holds his Bible in his hands as his photograph is taken … and he smiles.

David reading his Bible sitting on his bed in the Male Ward of the Leprosy Referral Hospital

David came to the Leprosy Referral Hospital in April 2014, and his is, sadly, a common story. He is from Ebonyi State and said that, when the illness started manifesting, a relative agreed to help him by taking him to native doctors to heal what was viewed as a spiritual issue rather than taking him to a hospital. From Ebonyi he was taken to Lagos, where he spent some time begging. His relative then brought him to Minna and checked him in to a hotel there, refusing to let David visit his own home. It was while he was at the hotel that someone suggested to him that he might have leprosy and told him to come to the Leprosy Referral Hospital. He came and was admitted for treatment … and has not seen his relative since.
Mallam Ibrahim, the Monitoring and Evaluation Officer of the Niger State TB and Leprosy Control Programme, said that, when David first came to the Leprosarium, he was withdrawn and depressed. He had not told any of his family members back in Ebonyi where he was since he left. Ibrahim, who is also a physiotherapist, said he pulled David aside and counselled him, telling him that leprosy is curable and encouraging him to open up and become part of the community. With this counselling from the staff, as well as treatment of his ulcers and proper exercise and nutrition, David gradually overcame his depression and began to be himself again and today he finally reconnected with his family members via cell phone.
Early detection and commencement of anti-leprosy drugs would have spared David all the pain and stigma he has been through and lifetime complications such as the lepromatous eruptions on his face. Leprosy is one of the 17 diseases of poverty collectively known as Neglected Tropical Diseases (NTDs). Within the group of diseases referred to as NTDs, leprosy is further neglected. Every state ministry of health in Nigeria runs a “Tuberculosis and Leprosy Control Programme”. In addition, tuberculosis gets a lot more global attention and funding.
The Non-Governmental Organisation The Leprosy Mission Nigeria (TLMN) seeks “to work towards a world without leprosy, where the power and impact of leprosy is broken … to minister, in the name of Christ, to the physical, mental, social and spiritual needs of persons and communities affected by leprosy, working with them to uphold human dignity and eradicate leprosy.” It was founded in 1874, to offer compassion to people suffering from leprosy and now operates in 34 countries worldwide. Since 1920, the organization has worked in partnership with mission agencies and churches in Nigeria to provide financial and technical assistance to leprosy centres. TLMN has developed a strategic partnership with the TY DANJUMA FOUNDATION (TYDF), and was one of the first leprosy focused organization to receive funding support from the organization towards reducing the burden and socio-economic consequences of leprosy in Nigeria. TYDF , a private philanthropic grant making Foundation established by General TY Danjuma. The Foundation’s headquarters are in Abuja, Nigeria, and it funds interventions across the country. Its focus areas include the provision of free healthcare, improving the quality of education for people younger than 18 years, contributing to poverty alleviation through the provision of clean water and the empowerment of women.
The Leprosy Referral Hospital in Minna, where we met David, is one of the projects supported by The Leprosy Mission Nigeria. Mallam Ibrahim took our team around the hospital, showing us the different wards and the new toilets that were built both for staff and patients. He also showed us where patients would soak their feet daily to help heal the ulcers that are common to those who have leprosy. After the feet have been soaked and medication applied, they are then wrapped in white gauze. We were able to meet some of the patients in the male ward, many of whom were resting in their mosquito-net covered beds. Pius of TLMN said that the nets were a donation and had helped to improve the recovery of patients as they had reduced the incidences of malaria and insect bites, which could cause secondary infection of ulcers. He also took us to the physiotherapy department, where he showed us the various techniques that are used in the hospital to assist persons living with leprosy improve the mobility of their limbs and reduce contracture. These techniques include hanging a stone wrapped in a sock from a patient’s feet and asking the patient to lift the feet, a technique used to reduce incidences of foot drop.

Renovated female ward at the Leprosy Reference Referral Hospital, Minna, Niger State

Mallam Ibrahim demonstrating physiotherapy to correct “foot drop”

TLMN received grants from the TY Danjuma Foundation in 2010 and 2012. These grants included the cost of renovating the Leprosy Reference Hospital in Chanchaga, Minna, which was originally built in 1921. The funds were used to renovate the ceilings and put in fans in both the male and female wards, build toilets for male and female patients, restore the walls which had been crumbling and restore the roof. The Officer in Charge at the Hospital, said that before the TYDF grant was used to intervene at the facility, the hospital was in a deplorable state. In addition to the renovation, the TYDF grant also allowed TLMN to pursue some socio-economic activities in the Kampani community of persons living with leprosy and training people affected by leprosy on rights-based approaches in interacting with government. These activities included providing vocational training and skill sets to family members of persons living with leprosy in order to help pull these families out of abject poverty.
Leprosy not only affects the individual but the whole family. Mary Daniel is a tailor in the small Kampani Community of persons with leprosy. Her mother is living with leprosy. Mary benefited from training to become a tailor as well as receiving a sewing machine from TLMN’s socio-economic empowerment programme, also funded by TYDF. “With my tailoring skills, I no longer toil in the farm the way I used to. I am able to earn more to take care of my family,” she said.

Mary, a tailor trained by TLMN

TLMN has other activities specifically at the Kampani Leprosy Referral Hospital beyond providing care, including the operation of an orthopedic workshop. TLMN Operations Manager Pius Ogbu Sunday took the EpiAFRIC team on a tour of the workshop and introduced the staff. The workshop provides customized orthopaedic limbs for patients of the hospital, both for those affected by leprosy and for general patients. The Head Orthopedic Technician, Linus, said that on average it takes about three days to construct a customized above-knee (AK) orthopaedic prosthetic. The staff members include technicians, NYSC corps members and IT students, most of whom were studying or had studied at the Federal University of Technology Owerri, the only university in Nigeria which offers a degree in Prosthesis and Orthotics Technology.

Above-knee artificial limb manufactured in the TLMN workshop

Ogbonna Izuchukwu, NYSC member serving at the TLMN Workshop

Support for leprosy programmes is dwindling worldwide, and TLM countries are having to look inward to raise funds to continue supporting the effort to eradicate leprosy. The case is the same in Nigeria, where, according to Pius, the focus is on raising support internally rather than relying on international donors. He admits that this has been a challenge, partly because people are simply not aware that leprosy is still a huge challenge in the country and partly because of the stigma attached to the disease. One of the ways in which the organization is trying to raise funding is through the orthopaedic workshop. It recently created a marketing department for the workshop to drive awareness about the work that is done there and increase sales of orthopaedic limbs to general patients and plans to open a display office in the central area of Minna, as well as eventually in Abuja. The workshop is also building an online presence through social media platforms like Facebook and Twitter, as well as a to help increase its visibility, which Pius and the workshop team hopes will translate into sales. The organization is also reaching out both in Nigeria and globally to raise awareness and funds for its operations.
Dr. Udo Sunday Odihiri, TLMN’s National Director, said that his motivation for working with persons living with leprosy comes down to one word … passion. He said that you don’t stumble into leprosy care by accident, that it is a very intentional decision. He also reiterated that “immediately you start taking anti-leprosy drugs, you lose the power to transmit the disease”. This overwhelming evidence is a compelling reason for people infected to commence treatment as early as possible. It reduces the burden of leprosy and prevents serious lifetime complications.

Dr. Udo Sunday Odihiri, National Director of TLMN

For TLMN, caring for persons living with leprosy is more than an 8-5 job. It is a passion, a calling to impact the lives of a segment of our society whom many of us have not only neglected but forgotten altogether. For people like David, it means having a home away from home.