Grow as big as a melon: a disease that threatens thousands of people

FFor decades, a growth the size of a large melon made Raymondo Okir’s life miserable. Okir, who lives in a village in northern Uganda, first noticed the swelling around his genitals in 1983. Within a year, the mass had grown so large that he developed back pain and found it difficult to wear pants and to have sexual relations with his children. woman.

“Everyone looked at me and laughed at me, and I felt inferior. It grew quickly,” says Okir, 78. “I felt fear. It was difficult to get dressed. I had a lot of back and waist pain and a lot of problems with my wife. Our relationship was not going well. I was afraid to come out in public.”

Other people in his village had similar growths, including his two brothers, but no one sought medical help. Then in 2021, Okir attended a funeral where village elders told him he had a hydrocele (swelling of the scrotum), a symptom of lymphatic filariasis (LF), and that surgery would help him. He went for treatment; During the operation, the medical team drained approximately three liters of fluid from the swelling around his scrotum.

LF, which can be painful and disfiguring, is transmitted through the bites of infected mosquitoes. It is listed by the World Health Organization (WHO) list of neglected tropical diseases. The end of 2022 is 794 million people lived in areas considered at risk of contamination in Asia, Africa, the Western Pacific and parts of the Caribbean and South America, while 51.4 million people were estimated to have been infected in 2018. The disease occurs in the most marginalized populations in rural areas with poor infrastructure, housing, water and sanitation.

Infection usually happens in childhood and damages the lymphatic system. The profoundly disfiguring manifestations of the disease – lymphedema (tissue swelling) or elephantiasis (thickening of the skin/tissue) of the extremities and hydrocele (swelling of the scrotum) – occur later in life. At least 36 million people remain with these chronic symptoms.

The WHO-recommended strategy for eradicating the disease is to roll out drug prevention treatments to at-risk populations and care for those affected. There is no cure for lymphedema, but self-care can help relieve pain and prevent further swelling, improving people’s mobility. Hydroceles can be treated with surgery to drain the fluid.

Since Okir had his surgery, life has improved. “I no longer have back pain,” he says. “I can have sex very, very well. When I go into the village and go to church, the people (who used to laugh at me) are silent. I point to them and ask, “Can you see (my hydrocele)?”

Dr. Charles Wamboga, head of LF at the Ugandan Ministry of Health, has heard similar stories. “There are people who come back and say to us, ‘I was able to get my family back; I was able to do some digging in my garden; I can go to the market and sell things, which I didn’t do before.’”

Efforts were made to tackle the disease in Uganda late 90’ssays Wamboga after a newspaper article about an association of people with hydroceles who thought they were a sign of wealth.

Officials conducted surveys to determine how many people were affected; Up to 17 million people were thought to be at risk and 6 million close to it a third of the population was estimated at the time to have had the disease, he says.

Since then, several rounds of mass drug administration have been carried out in affected communities, and authorities have been monitoring transmission. Efforts are now focused on the treatment of lymphedema and hydrocele surgery.

There are still tens of thousands of people in Uganda suffering from and not receiving treatment for lymphedema and hydrocele. Sightsan international NGO that has provided training to medical professionals who perform surgeries.

Dr. James Olum, a senior medical officer at the Orum Health Center in Otuke, a town in northern Uganda, was trained by Sightsavers to perform surgeries. He notices common traits in his patients. “Most people who come for treatment are lonely. That’s the story they tell,” he says. “Most of them tell me they are having problems in their marriages. Some of them have broken marriages… Most of the people I see are poor.”

While more people are coming forward, Olum says, there are others who don’t seek help and the stigma keeps many from going out in public. Swelling is sometimes seen as a sign of witchcraft. Health centers also have other priorities, such as maternal and child health, and therefore cannot always devote resources to LF, he adds.

The WHO believes that 21 of the 72 countries where LF is endemic have eliminated the problem as a public health problem. The progress is encouraging, said Jonathan King, team leader of the WHO’s Neglected Tropical Diseases Program. “Since the founding of the LF elimination program (countries) have done quite well,” he said. “There is still a lot of work to be done, but compared to some of the other neglected tropical diseases, progress has been made.”

One factor is that pharmaceutical companies, including GSK and MSD, donate WHO-recommended drugs for free. “They deserve a lot of credit. This is a good thing they have done, and LF in particular has been very impacted by (these drugs),” King said.

There are 51 countries that have not eliminated LF. All but 10 of these should be able to stop mass drug administration by 2030, says King, while another 23 should be able to achieve elimination (in addition to the 21 that have already been validated).

Back at the Orum Health Center in Uganda, Okir remains happy and grateful for his surgery. He says that his relationship with his wife is better and that, unlike before, she makes porridge for him in the morning. “She shows me a lot of love,” he says. He encourages others to seek treatment. His son, who also had a hydrocele, underwent surgery, as did two other men from his village.

“I explained the good side of it, that’s why they came by (the health center),” he said. “If I could go back in time, I would have had surgery sooner. I feel so good. I am free.”