Myths and misconceptions: Stigma on persons living with elephantiasis

It is about 1500 hours on Saturday and chiefs and people of Kodo community (not real name), a suburb of Bongo District in Upper East Region, gathered for their annual Ndaakoya festival.

The festival has been instituted to enable traditional leaders of the community to offer sacrifices to their ancestors to give them a bumper harvest and allow members of the community to socialise.

However, this was not a joyful day for Akolpoka Nsoh (not real name), a 43-year-old widow, who sat under the mango tree behind her house looking traumatised and dejected as she covered her swollen left leg with a piece of cloth.

Akolpoka’s left limb has swollen, thickened, and disfigured with fluid oozing out of a wound it and as a result she has been stigmatised and excluded in many activities in her house and the community.

Akolpoka’s condition, according to health experts, is elephantiasis but some people in Akolpoka’s house and community believe her condition is a spiritual attack and that she has been cursed.

“It happened when I gave birth to my third child and this is about seven years ago, when I woke up one day and saw my left leg swollen and I felt cold but I did not know what it was and for more than a week, the condition was still there and some pox began to grow on it.

“I was advised to seek traditional treatment because it was not a condition that could be treated at the hospital, so, I did but it only got worse, so I had to accept that I was cursed,” the 43-year-old widow with a brown bandage tied around her leg broke down in tears while narrating her pain.

Misconceptions

Akolpoka has not only been isolated from social activities but has also lost her source of livelihood due to her condition.

“I no longer have friends and my rice-selling and basket-weaving businesses have all collapsed’’.

People do not want to transact business with me again because of my condition.

“I used to sell parboiled rice during the day, especially on market days and weave baskets at night but for seven years now I have not been able to do so, and my family barely eat two meals a day’’.

“Many people think I am cursed and so anyone having something to do with me will also be cursed and suffer similar predicament, so people do not want to associate themselves with me anymore,” she shared tears while narrating her ordeal to the Ghana News Agency (GNA).

Cases of Elephantiasis in Upper East Region

The plight of Akolpoka is not an isolated case as it reflects the reality of a lot more people suffering in the region. The disease is endemic in the whole of Upper East Region with several cases recorded in all the 15 Municipalities and Districts in the region.

According to the Ghana Health Service, the disease is endemic in 12 regions out of the 16 regions of the country with Upper East Region having the highest cases of 2,373.

These are just cases that have been reported to the health facilities but there are a lot more in the deprived communities who are scared to report due to myths and misconceptions deepening the stigmatisation of people suffering from the disease.

Cynthia Ayelazoya (not real name), a 37-year-old hairdresser, from the Bolgatanga Municipality, has been compelled to close down her shop for the past two years because of the same condition.

She is also suffering from elephantiasis and the condition is so severe that she cannot stand on her feet to work.

“I was not able to interact with some of my family anymore because they did not want to be closer to me, they thought my wound smelled because there is always fluid flowing from the wound,” she lamented.

Cynthia, however, has experienced a sigh of relief recently because a community health volunteer whom she contacted convinced her to visit the hospital for care.

“I have a sore and anytime I visit the hospital for dressing and medications, I usually feel better, but the condition has persisted,” she lamented.

The plights of Cynthia and Akolpoka are the sad reality of how many people suffering from Elephantiasis are being stigmatised, discriminated against, and rejected by their families and communities in the region.

Statistics and impact

According to the World Health Organisation (WHO), Elephantiasis, also known as Lymphatic filariasis is one of the Skin Neglected Tropical Diseases (NTDs) which occurs when filarial parasites are transmitted to humans through mosquitoes and cause damage to the lymphatic system.

According to WHO, Elephantiasis is a public health concern and affects over 120 million people in 72 countries globally.

In Africa, the disease is a serious threat to approximately 406 million people.

According to the Ghana Health Service, Elephantiasis is endemic in 114 districts out of the 260 districts in Ghana with 11 districts serving as hotspots for the disease.

Mental health

Aniah Tong (not real name), a 47-year-old woman from the Talensi District recounting her plight said she was a trader in Accra where she lived with her family but had to move back home to Bongo when her husband rejected her due the chronic disease, she had carried for the past 14 years.

“I was traumatised and I thought of committing suicide, but I do not know what stopped me because being rejected by your husband due to the sickness was really heart breaking. I thought it was spiritual until when I came home and visited my village clinic where they gave drugs that I am now seeing changes,” she lamented.

Many victims of Elephantiasis are not aware that their conditions were medical and could be managed or treated. Due to misconceptions, a greater number of them are being stigmatised and rejected by their families, peers and society leading to mental health problems.

Need for increased education

Mr Samuel Tang, the Bongo District Disease Control Officer of the Ghana Health Service, told the Ghana News Agency that elephantiasis was endemic in the Bongo District, and they had been battling it for years.

He said the district recorded 427 cases of Elephantiasis in 2022 alone, these are cases reported to the health facilities, but we believe there are many in the communities unreported and so the number could be more”.

He said due to stigmatisation a lot of people who suffer from any of the NTDs did not report to healthcare facilities and the district health directorate had been working to create awareness about the diseases and to encourage people to report such cases to health facilities.

“Our battle is to eliminate the pains the affected persons are experiencing and to help them to overcome the stigma they are experiencing from society,” Mr Tang stressed.

He said one of the major challenges confronting their efforts is the resources to intensify education on the disease especially in hard-to-reach communities and noted that although the treatment for NTDs patients was free, the supply of drugs was irregular.

“We need medications and resources to train them to be able to manage the conditions themselves at their homes,” he said.

Ms Francisca Adongo, Bolgatanga Municipal Health Promotion Officer, Ghana Health Service, explained that elephantiasis and leprosy were the common skin-NTDs in the area, adding that there are currently over 200 people suffering from the skin-NTDs in Municipality with most of them being elephantiasis patients.

Mr Melton Aberinga, Programmes Director, Development Research and Advocacy Centre (DRAC), one of the leading organisations working to increase awareness on NTDs told GNA that elephantiasis, leprosy, and yaws were the most prevalent skin-NTDs conditions in the Upper East Region.

Mr Aberinga identified ignorance, stigmatisation, myths, and misconceptions as major barriers to the fight against the skin-NTDs and called for stronger partnerships among stakeholders to intensify education.

He said investment in fighting skin-NTDs was not enough globally and nationally so the need for governments to commit more resources to fighting the canker.

SDGs and Recommendations

Elephantiasis is just one of the many NTDs that have over the years been affecting many people around the world with rural folks being the most affected.

According to WHO, there were 20 Skin NTDs including Onchocerciasis, Trachoma, Schistosomiasis, Soil-transmitted helminthiasis, Buruli ulcer, Yaws, Leprosy, Guinea worm, Human African Trypanosomiasis (HAT), Cutaneous leishmaniasis and Rabies, among others.

Globally, about one billion people, approximately one-sixth of the world’s population suffer at least one of the conditions and most of these people are prevalent in tropical areas who live in impoverished communities.

The United States government and Global Neglected Tropical Disease Efforts reported that about 185,000 people die each year from the NTDs.

It is estimated that the economic cost of neglected tropical diseases is high for affected families with households’ income and wages lost to expenditures and these diseases amount to about US$33 billion per year.

In 2023, WHO Africa’s Expanded Special Project for Elimination of NTDs reported that around 99 million people in 26 African countries were at risk of missing treatment for diseases like elephantiasis, onchocerciasis among others due to insufficient funds for drugs.

According to Dr Matshidiso Moeti, the WHO Regional Director for Africa, “Africa has made great strides against neglected tropical diseases, with millions of people now living free of the pain and suffering caused by these illnesses, but to secure and build on these gains, further investments, including adequate, predictable and sustained funding is crucial to speed up the pace towards ending these diseases”.

The United Nations Sustainable Development Goals (SDGs) particularly goal three which put emphasis on good health and well-being for all by 2030 and the African Union Agenda 2063 would not be achieved if the NTDs particularly Elephantiasis is not eliminated.

This, therefore, called for strategic and deliberate investment and policies that would not only help to always make drugs available but would contribute to increase awareness creation at the household and community levels to fight stigmatisation, myths and misconceptions and encourage people to report cases and for initial treatment.