Nigerians’ spirited battle against a debilitating disease
Hauwa, a 74-year- old widow is going blind. Gradually, the brightly lit world that she sees every time she opens her eyes is thinning out of sight. “The doctor said that in a few months, I could go blind,” she said staring miserably into the night. Think how sad it must be for her. Think how excruciating it must be to wait silently for that moment when her eyes would totally fail her. Imagine how hurtful it could be if your ability to see depends on some elusive elixir or life-saving medication that is not yet within your reach.
But you are not Hauwa and you are not blind, hence you may never understand what it feels like to suddenly develop lesions in your eyes and a creepy rash all over your body. You couldn’t decipher even if you try, how it is to lose weight, develop sunken eyes and lose appetite for food you erstwhile loved to eat. Unlike the 74-year-old native of Taraba river valley, Taraba State, you may never understand how it is to lust for sight and hopelessly lose it.
Swathed in a thick, dusty blanket, Hauwa cut the picture of a child yet to recite her first happy rhyme. ‘Awake, it always feels like I am falling asleep,’ she said. Asleep, she probably prefers her dreams, even if quick with monsters, to the world with all its breakable joys, killer-diseases and compacts with the dying.
Afusatu, her 26-year- old grandchild revealed that she was diagnosed with Onchocerciasis two years ago. “Ever since, she said she has accepted her fate and that she would not subject herself to any medical treatment because her best friend who died last year could not regain her sight despite going through a painful surgery to regain her sight,” she said.
Safiya’s case is remarkably different from Hauwa’s. Narrating her grandfather’s painful experience with the disease, she recalled, life for him was very difficult and sad. “He had me constantly beside him but even though I was only 10 years old, I could always guess that he was lonely and sad. Eventually, he died from a severe fever. He died an angry and unhappy man,” she said.
Narrating her cruel encounter with the disease, Safiya disclosed that after her grandfather’s death, she relocated to live with her aunt two settlements away from her village but unknown to her, the black flies causing the disease spared no one even in her new abode. “It was like everyone of us were silently waiting for our time to go blind. We had tried several herbal remedies but none seemed to have worked in curing us of the disease,” she said.
Over the years, Safiya got married and had four kids but trouble loomed when she started to itch terribly all over her body. The constant itching got worse and developed into sores as she continued to scratch it. This caused a lot of bleeding that led to very ugly scars and wounds on her arms, legs and buttocks. It eventually cost Safiya her sight and her marriage.
Such painful experiences resonate the buried and often unheard narratives of several sufferers of river blindness across the country. However, unlike Hauwa and Safiya, Lt. General Theophillus Danjuma(rtd.) had a life-changing encounter with the disease. According to him, his personal experience with onchocerciasis was not as a policy maker, scientist or medical doctor, but as a patient. “In 1964, I led my company of soldiers on foot for two weeks on a flag march along the Nigeria-Cameroun border, sleeping roughly in tents. Two years later, I woke up one morning with red swollen eyes and very itchy body. At Guinness Eye Hospital, Kaduna, Professor Bhar took a skin snip of my skin from my hip, applied some chemicals to it, placed it under the microscope and asked me to look at it.
“To this day I shiver whenever I recall the sheer number of very long worms that I saw swimming on that tiny piece of my skin. My treatment then lasted two weeks. When four months later I was nominated to attend the Army Staff College in Carberly, England, I collected a medical report from Prof. Bhar to confirm my state of health. There was tremendous excitement in the eye of medical community at the prospect of seeing and probably treating an Onchocerciasis patient. I was attended to by no less than five Professors. I later understood that a room full of medical students were waiting to also see me if I had been found positive. They were sorely disappointed; Prof. Bhar had already cured me,” he disclosed.
The experience exerted far-reaching influence on Lt. Gen Danjuma and he eventually got involved in the control of river blindness. Thus in 1995, he donated a second hand four wheel drive to Mission to Save the Helpless (MITOSATH), an NGO involved in the fight against river blindness, to aid it in its bid to eradicate the disease in Taraba State. MITOSATH was the only local NGO fighting river blindness and distributing Mectizan, a curative drug for the disease. Subsequently, he established the TY Danjuma Foundation and through his organisation and MITOSATH, TY Danjuma claims to have supported approximately 12 million treatments in the country.
About Onchocerciasis
Onchocerciasis is a parasitic disease caused by the worm onchocerca volvulus, a parasitic worm that lives up to 14 years in the human body. Each adult female produces millions of microfilariae that migrate through the body and give rise to various manifestations. The disease is transmitted by the bites of black fly, Simulium damnosum ssp (kpu kpu in Igbo), according to ProfessorvRich Enujioke Umeh, Professor of Ophthalmology, University of Nigeria Nsukka (UNN). The breeding sites are the banks of fast flowing rivers because the larva requires a lot of oxygen to mature. Consequently, people who live and work in or near such rivers get bitten often and therefore suffer the worst manifestation of the disease that is, blindness. Thus the disease is commonly known as River Blindness, explained Professor Umeh.
Onchocerciasis is responsible for an estimated annual burden of 388,576 disability adjusted life years (DALYs), 60 per cent of which is accounted for by Onchocercal Skin Diseases (OSD). Onchocerciasis is a disease of considerable socio-economic and public health importance. It has been implicated in cases of musculo-skeletal pain, epilepsy, inguinal hernias, secondary amenorrhea, spontaneous abortion, lactation difficulties, infertility and sterility. About 99 per cent of Onchocerciasis infected persons live in remote rural communities of Africa where about 75 million people are at risk of infection.
The others live in Central and South America and Yemen in the Arabian Peninsula. The high transmission in Nigeria has been attributed to several factors, including misconceptions of the disease by several cultural groups which had led to the neglect of personal protection against the disease vector and non- compliance of infected individuals to treatment regime. For instance, investigations on the traditional beliefs of Yoruba women in Southwest Nigeria and Igbo women in South East Nigeria revealed that traditional societies living in endemic regions usually hold Onchocerciasis responsible for many reproductive problems, according to Dr. Okoye, Ikem Chris of the Parasitology and Biomedical Research Unit, Department of Zoology, University of Nigeria, Nsukka, Enugu State.
According to Okoye, the vast spread of the disease constitutes a serious impediment to effective control. The disease control is most effective using chemotherapeutic approach and the present drug of choice is mectizan (ivermectin). This strategy is, however, constrained by lack of community support resulting from the inability of control experts to understand local conceptions, priorities and preferences, especially their beliefs on the causes and effects of the disease and their attitude to health-care seeking behaviours, he said.
Women and infants are known to have higher susceptibility and hence greater morbidity rate to tropical diseases than males. They are known to have higher episodes of illness and more hospital visits even outside gynecological and obstetric purposes.
In traditional African societies, women are very strategic in the health outcomes and well being of the family. Despite their low level of knowledge about healthcare and poor financial resources, women determine and offer the first-line (home-made or domestic) treatment to sick members of their households, especially infants and children.
According to studies conducted by Okoye about the perception of the disease by Hausa women of the Hawal River Valley and its adjoining communities lying within the southern border of Borno and northern part of Adamawa states, an area well known for serious ocular and socio-economic tolls of Onchocerciasis.
Findings revealed that many of the women attributed many reproductive disorders to Onchocerciasis. Three principal morbidity indicators attributable to Onchocerciasis were nodules, leopard skin and rashes. Men have special preference for women with palpable nodules of the lower extremities. It is believed that tingling the nodules improved libido and sexual excitement. A man with a head nodule (mugu) is believed to be wicked, quick- tempered and undesirable as an in-law. “I will not give my daughter in marriage to a mugu, even if he has plugged out (excised) the nodule,” said a 50-year-old female farmer.
Leopard skin was viewed as a familiar trait that occurred in some women at the onset of menopause. An unmarried lady who develops the condition is therefore viewed with suspicion. “You see that girl with leopard skin, suitors would think she can no longer bear children. When leopard skin appears clearly on the chin, it shows that the lady is gradually approaching cessation of her monthly blood flow (menopause),” responded a 37- year-old carpenter.
Craw-craw (papular rashes) is viewed merely as cosmetic blemishes but the condition is also believed to be contagious. Potential suitors therefore resent spinsters with this condition. “Except a girl was cured of craw-craw, prospective suitors and family members are discouraged from seeking her hand in marriage,” was the response from a 55-year-old school teacher. Furthermore, a 60-year-old male farmer had the perception that “Craw-craw was contagious and no girl having craw-craw was given out in marriage to avoid embarrassment.”
Findings revealed that deep-rooted ignorance and incorrect beliefs about the causes and effects of a disease may lead to the neglect of personal protection measures thus allowing intensification of the disease morbidity in the affected areas. They also throw more insight into local disease convictions, which are known to have direct effect on health and illness behaviour. These deep-rooted convictions have great effects on the levels of compliance to and therefore success of any Onchocerciasis control regime. It is also the basis on which infected individuals seek particular kinds of remedies in preference to other forms when they suffer from Onchocerciasis-induced symptoms. The issues raised by the women should be subjected to further biomedical investigations, he suggested.
Consequences of the disease
Blindness and impaired vision are the most dangerous disabilities associated with the disease and are seen more among endemic communities living around the foci of transmission. Onchocercal blindness is more common in the savanna bio-climatic zone than in the rain forest zone and it is often associated with changes in the skin. Itching and scratching are the most important early manifestations of onchocercal dermatitis and may affect any part of the body. Alteration in skin pigmentation also occurs early in the disease and may affect any part of the body.
Papular rash may develop at any time on any part of the body and is usually associated with severe itching, which leads to scratching, bleeding and ulceration with secondary infection. Sowda is a severe form of onchocercal dermatitis first described in Yemen. Those affected have intensely itchy, dark and thickened skin, with papular rash and enlarged, soft, non-tender, regional lymph nodes. Sowda is usually localised and typically involves one leg but more generalised form may involve both legs and any part of the body. Other forms of onchocercal dermatitis are known as lizard skin and leopard skin. In long-standing onchocercal dermatitis, the skin generally becomes atrophic, fragile, wrinkled and inelastic and areas of it, often the shins, develop the classical spotting de-pigmentation of leopard skin.
Presence of palpable nodules is another evidence of Onchocerciasis in a person. Nodules tend to be more numerous and widely distributed in the rainforest than in the savanna but numbers of microfilariae in the skin are higher in the savanna. The classical method of determining the prevalence and intensity of Onchocerciasis is by the demonstration and counting of microfilariae in biopsies obtained by skin snipping. Although very specific, this technique is inadequate for detecting early, light infections and is becoming increasingly unacceptable to the populations investigated due to different reasons, one of which is the awareness of the potential risk of secondary infections, especially with HIV.
A stitch in time
Efforts to control river blindness in sub-Saharan Africa started several decades ago. In the 1950s and 1960s, attempts were made to control the disease on a small scale in the hardest-hit areas of Volta River basin, Benin, Ghana, Cote d’Ivoire, Mali, Niger, Togo, Burkina Faso) but such uncoordinated national control efforts did not produce any lasting results because of the ability of the black fly that transmits the disease to cover long distances and cross borders. Re-invasion was a very common occurrence and this made uncoordinated national control efforts ineffective.
At an international conference in Tunisia in 1968, participants concluded that the disease could be controlled if addressed on a sufficiently large scale. Scientists from WHO and other experts contributed to the preparation of a regional control plan. Several donors expressed interest. Thus a partnership was born, and the Onchocerciasis Control Programme (OCP) was formally launched in 1974 to eliminate the disease as a public health problem and mitigate the negative impact on the social and economic development of affected areas.
The OCP initially included seven countries, WHO, the World Bank, the UN Development Programme and the UN Food and Agriculture Organisation. Participation eventually increased to 11 countries in West Africa with more than 25 donors, some non-governmental organisations (NGOs) and numerous rural community groups.
The sustained commitment of bilateral and multilateral donors, NGDOs, national governments and other partners involved in the OCP made this programme a major and impressive public health success story that continues till today. Transmission of the disease has been virtually halted in almost all the targeted West African countries, 600,000 cases of blindness were prevented, and more than 20 million children born in the OCP area are now free from the risk of contracting river blindness. About 25 million hectares of arable land is safe for re-settlement.
It was indeed this success and the same commitment and unwavering support of the donors and NGDOs and other partners that led to the creation of the African Programme for Onchocerciasis Control (APOC) in 1995 to control river blindness in the non OCP endemic countries in Africa.
The historic pledge by Merck to donate Mectizan “to anyone who needed it, for as long as it was needed” marked the start of the world’s longest ongoing medical donation programme, and one of the largest public-private partnerships ever created. APOC is a unique global partnership which brings together 19 participating countries with the active involvement of the Ministries of Health and their affected communities, several international and local NGOs, the scientific community, the private sector (Merck & Co., Inc.), several multilateral and bilateral donors, UN agencies and more than 120,000 rural African communities, according to Dr Grace Fobi, Community Ownership and Partnership Officer at APOC.
How a youth corps member started the fight in Nigeria
The dark hole of blindness was discovered in the “village of the blind” on Bali- Mambilla road Nigeria, by Francisca Olamiju, a youth corps member in 1995. Olamiju felt it was preventable blindness, and that something can be done to stem its tide, thus she established Mission to Save the Helpless (MITOSATH) the first national non-governmental development organisation to combat Onchocerciasis in Taraba State.
At the time of the discovery, majority of the afflicted were men and women in their prime age, the breadwinners of homes and the community, who became dependent on their children for mobility, the result of which was an endangered set communities with extreme poverty, mental and physical growth retardation, and almost non-existent academic activity.
With the timely seed effort in one LGA through Ivermectin Distribution Program (IDP) and an initial treatment record of 22,622 in 1996, MITOSATH has grown to support the three states of Taraba, Ondo and Lagos in mapping, baseline surveys, control and elimination of a cluster of diseases referred to as Neglected Tropical Diseases: Onchocerciasis, Lymphatic Filariasis (LF), Schistosomiasis, Soil Transmitted Helminthes (STH), and Trachoma in 54 Local Government Areas. Working with her government partners and with progressive data showing consistent intervention, a cumulative treatment figure of over 9.6million with 24million tablets of Mectizan has been reached against Onchocerciasis as at 2010.
The dividends of Olamiju’s foresight is continually felt across the disease infested areas in the country. And the case of 38-year-old Zaki Baushe is instructive to note. In 2006, Baushe, a tailor in Akwanga Local Government Area, Nasarawa State, stood in danger of losing his sight and livelihood entirely. Baushe noticed that his vision was fading and it became difficult for him to perform the simplest tasks. As his blindness only worsened over time, Baushe was forced to abandon his old treadle sewing machine and agonised helplessly, over the creeping blindness that threatened to rob him of his livelihood and lifeline to his entire family.
However, Dr. Emmanuel Miri, resident technical adviser for the Carter Center’s health programmes in Nigeria, discovered Baushe’s case during a routine visit to administer medicines in Kambre. Listening to his symptoms, it was clear to Dr. Miri that Baushe was suffering from river blindness, also known as Onchocerciasis. Baushe was surprised to learn that his affliction was caused by the repeated bites of black flies that swarmed near his village. Through their bites, some of these flies had deposited larvae into his body, which grew into parasitic worms. However, it was the offspring of these worms, called microfilariae, that were the principal cause of his troubles. They swarmed under his skin, causing intense itching and skin discoloration, and had migrated into his eyes, causing lesions that had damaged his sight.
