Buruli Ulcer: The Neglected Disease
His facial expressions as the nurse dabs the stinking fluid dripping from his wound with cotton wool and iodine show pain and despair.
Rising almost to his knee and enveloping his right leg, Benjamin Essel's lesion is a horrific sight to behold. The skin above his ankle has been mostly eaten away. The puffy spongy reddish wound has been eating his leg for the past 10 years.
Like many patients, 27-year-old Essel, who became a victim of Buruli Ulcer (BU) at age 17, while preparing to write his JSS final exams at Kyebi in the Eastern Region, has been living at the Buruli Ulcer Center at Amasaman in the Ga West District of the Greater Accra Region for the past two-and-half years.
Though a dangerous disease, the center has been neglected by government, leaving Benjamin and his compatriots' survival to the mercy of philanthropists, including World Vision.
Painfully, World Vision is winding up its support for the disease, especially at the time it is fast gaining grounds again.
About 700 cases have been recorded this year alone to the chagrin of health officials.
Buruli ulcer is a disease caused by infection with Mycobacterium ulcerans .
According to Dr. Edwin Ampadu, the National Focal Person for BU at the Disease Control and Prevention Department of the Ghana Health Service (GHS), it is one of the most neglected but treatable tropical diseases.
The causative organism, he said, is from the family of bacteria which causes tuberculosis and leprosy, but BU has received less attention than these diseases.
According to him, infection of the disease leads to extensive destruction of skin and soft tissue, with the formation of large ulcers usually on the legs or arms.
Patients who are not treated early, he said, often suffer long-term functional disability such as restriction of joint movement, as well as the obvious cosmetic problem. Early diagnosis and treatment are vital in preventing such disabilities.
Signs And Symptoms
Buruli ulcer, Dr. Ampadu noted, often starts as a painless swelling in the skin called a nodule. But it has the potential to spread rapidly. He said because of the local immunosuppressive properties of mycolactone, or perhaps as a result of other unknown mechanisms, the disease progresses with no pain and fever.
He added that the painless condition may partly explain why those affected often do not seek prompt treatment.
However, without treatment, he said, massive ulcers result.
'Sometimes bone is affected, causing gross deformities. When lesions heal, scarring may cause restricted movement of limbs and other permanent disabilities in about a quarter of patients.
'There are other conditions that may mimic BU so there is the need to go for a lab test to determine if you have the ulcer'.
The exact mode of transmission is still under investigation. According to Dr. Ampadu, some patients stated that the lesions develop at the site of antecedent trauma.
He said research suggests that in Africa, some aquatic insects of the order Hemiptera (Naucoridae and Belostomatidae) can harbour M. ulcerans in their salivary glands and transmit the disease to other animals.
More recently, he indicated that data from Australia suggested that salt marsh mosquitoes test positive for M. ulcerans DNA, although transmission by this type of mosquito has not been established.
He said further research is in progress to establish the exact role of insects and other factors in the transmission of the disease to humans.
Buruli Ulcer frequently occurs near water bodies. People with the disease mostly live around slow flowing rivers, ponds, swamps and lakes, with other cases occurring following flooding.
Dr. Ampadu elaborated that activities that take place near water bodies, such as farming, are risk factors, but wearing protective clothing appears to reduce the risk of the disease.
The reasons for the growing spread of BU remain unclear, especially in Ghana, with the source of the disease proving difficult to be established.
In Amasaman, all ages and sexes are affected, but most patients are among children under 15 years. Globally, however, the inverse is true, according to the World Health Organization.
In general, there is no difference in the infection rate among males and females.
The disease can affect any part of the body, but in about 90 percent of cases, the lesions are on the limbs, with nearly 60 percent of all lesions on the lower limbs.
Dr. Ampadu said unlike tuberculosis, there was no evidence to suggest that infection with the human immunodeficiency virus (HIV) predisposes individuals to BU infection.
There is also no evidence that the disease can be transmitted from person to person. There is little seasonal variation in the incidence of the disease.
Prevalence in Ghana
Like Essel, more than 11,000 people, including 50-year-old Victoria Oppong, a trader, and Ama Foa, a drinking spot operator and also a native of Medie, near Amasaman, have been struck by the disease in Ghana since 1993.
The disease, according to Dr. Ampadu, is prevalent mainly in poor rural communities where the indigenes depend on soil tilling for their survival.
'The endemic areas are from Brong Ahafo, Western, Central, Eastern and Greater Accra regions including some reported cases in Ashanti and Volta regions too. New cases are still being reported.'
The first few cases of BU in Ghana, he said, were discovered around 1971 in the Greater Accra region. The focus was along the Densu River and its tributaries.
Later in 1989, additional cases were discovered in the Asante Akim North district of Ashanti region by a Dutch named Van der Werf.
The public healthcare system saw the seriousness of the disease but efforts to tackle it remained latent until political and media interests on BU surged around 1992.
Dr. Ampadu said so far, 700 cases have been recorded this year but it is expected to rise to 1,000.Awareness
When questioned about their knowledge of the disease, Essel, Oppong, and Ama all answered in the affirmative that they never heard about it until they were informed by the doctor.
'I started having a swollen foot, so I went for treatment and it was gone, but unfortunately one year later, my foot started swelling again,' Ama Foa said. 'I felt like they've poured hot water on my foot. People were saying I've been cursed. I believed what they said.
'Because of what people were implying, I started using herbal medicine until the pain was too much. That was when my son, who came over to visit me, suggested I should visit the hospital, which I obliged.
'After a number of lab tests, the doctor told me I was suffering from Buruli Ulcer.'
Neither Oppong's nor Essel's stories was different. They had also thought the nodule in their legs were boils, till the boils turned into sores and started discharging fluid as they spread rapidly.
Dr. Ampadu noted that the limited knowledge of the disease, its focal distribution and the fact that it affects mainly poor rural communities contribute to low reporting of cases.
Social And Cultural Undertones
Fifty-year-old Victoria Oppong was not spared from believing that her illness had to do with spiritual influence, 'so I started using herbal medicines.'
Essel's parents had also believed it was a curse so they also sought for traditional treatment which contributed to the delay in reporting to a health facility.
In Ghana, just like any developing country, socio-cultural beliefs and practices, Dr. Ampadu said, strongly influence the health-seeking behaviours of people affected by BU.
'The first recourse is often traditional treatment. In addition to the high cost of surgical treatment, fear of surgery and concerns about the resulting scars and possible amputations may also prevail.
'Due to the disfiguration, stigma is a problem that also prevents people from seeking treatment. As a consequence, most patients seek treatment too late, and both the direct and indirect costs are considerable'.
The impact of the disease on the few health facilities in the affected areas is enormous. The long hospital stay, often more than three months per patient, represents a huge loss in productivity for adult patients and family caregivers, and loss of educational opportunities for children.
He stressed that the long-term care of those disabled, most of whom are children aged 15 years, places an additional costly burden on affected families.
'Most often, I have to stay away from people because my sore discharges a smelly fluid which makes people shy away from me,' Essel noted. 'Personally, I don't feel comfortable when people behave that way towards me. So I prefer to stay indoors.'
'There are a lot of stigmas on the disease,' Dr. Ampadu confirmed. 'The first is that physically, it leaves a big scar on the body and people are shy. We have had some severe cases, and we have decided to do some radical approach, and that is amputation.'
He said mothers could often leave for treatment for long periods, only to come back and find their husbands remarried, leaving them in despair and rejected.
People, according to him, often believe BU patients have been cursed by someone, or the patient is suffering because he or she has done something bad.
'This perception forces them to spend long times at home visiting oracles, taking herbal medicine, than reporting to hospitals on time. Most of them accept what the society say, leaving them to read a lot of meaning into it.'
These things, he noted, take time, and the wasted time, worsens their lesions.
According to the doctor, the stigma of the disease is huge, and is strongly associated with the mysterious nature of the condition, the lack of knowledge about its mode of transmission, and the lack of proper treatment.
Access To Treatment
'Buruli Ulcer has lost a profile in our public health to the extent that attracting donor support is difficult,' said Dr. Ampadu.
'Unfortunately, Buruli Ulcer looks very ugly. No one wants to invest in it, and therefore it is termed as a negative tropical disease.'
Treatment is paid for by NGO partnerships and a government programme doctors say is underfunded. The cost in treating early detected case starts from $20 to $50 because it requires a minor surgical excision of the lesion.
'For advanced cases, which may require prolonged treatment with extensive skin grafting, it is between $900 and $1000.
'This includes a minimum six-month hospital stay and one graft. Sometimes some of the patients have to go for more than one grafting.
'Treatment of the disease is not covered by National Health Insurance, though that's apparently changing.'
'Since 2007 when the disease started, I haven't been able to work again,' says Victoria. 'People were not even buying anything from me, so I had to abandon my trade and survive on the limited capital that I had.'
Dr. Ampadu indicated that the disease imposes a serious economic burden on affected households and on health systems that are involved in diagnosing the disease and treating patients.
'Children, who are supposed to be in schools and learn, drop out from school for treatment, which lasts very long.
'Their education comes to an end after they have had treatment, simply because the family is poor and the little money available had been used for treatment.'
Martin Oppong, BU programme coordinator for the Ga West Municipality, said even though the project is a national programme, the challenges they encounter are enormous with regard to logistics, such as dressing material and feeding of patients.
'The treatment is free but because the people come with very big wounds, some tend to stay at the ward for six or eight months and we need to feed them, including family members who stay around to take care of their needs'.
Most of the patients are the breadwinners of their families and getting their daily bread, he said, becomes a challenge.
With the sole support of World Vision and some philanthropists they have over the years supported the patients but unfortunately, the World Vision Buruli Ulcer Prevention and Treatment Programme, which has supported the project for the past six years, ended last month.
The situation, he said, is affecting the work at the center badly.
By Henrietta Abayie