Growth the size of a melon- a scrotum-swelling disease threatening thousands

Efforts to eliminate lymphatic filariasis, a painful and disfiguring mosquito-borne disease, are making progress, yet it continues to impact lives in 51 countries around the globe.

Raymondo Okir, a 78-year-old man from a village in northern Uganda, experienced firsthand the devastating effects of this disease for decades. He first noticed a swelling around his genital area in 1983, and within a year, the growth—resembling a large melon—had escalated to the point where he faced debilitating back pain and struggled with wearing clothes or maintaining intimacy with his wife.

“Everyone would look and laugh at me, and I felt inferior,” Okir recalled. “It grew quickly. I was filled with fear. Getting dressed was a challenge, I had severe back pain, and my relationship with my wife suffered. I was scared to go out in public.”

Others in his village also had similar growths, including his two brothers, but none sought medical help until 2021, when village elders informed Okir that he had a hydrocele, a symptom of lymphatic filariasis, and suggested surgery as a remedy. He proceeded with the procedure, during which the medical team drained approximately three liters of fluid from the swelling.

Lymphatic filariasis, which causes painful and disfiguring symptoms, is transmitted through infected mosquito bites and is recognized as a neglected tropical disease by the World Health Organization (WHO). By the end of 2022, about 794 million people were living in regions at risk for the infection, particularly in Asia, Africa, and parts of the Caribbean and South America. The disease predominantly affects marginalized communities in rural areas with inadequate infrastructure and sanitation.

Dr. James Olum, a medical officer at the Orum health center, noted that many patients arrive feeling isolated and report issues with their marriages. “Most people who come for treatment are lonely. Many say they’re having troubles in their relationships, and some have even faced breakdowns in their marriages. Most are also living in poverty,” he explained.

Typically, infection occurs during childhood, leading to damage in the lymphatic system, with significant symptoms like lymphoedema, elephantiasis, and hydrocele manifesting later in life. Currently, at least 36 million people live with these chronic conditions.

The WHO’s strategy for eradicating lymphatic filariasis involves distributing preventative medications to at-risk populations and providing care for those affected. Although there’s no cure for lymphoedema, self-care can ease pain and prevent worsening of the condition. Hydroceles, on the other hand, can be addressed through surgical intervention.

Since undergoing his procedure, Okir has seen a marked improvement in his quality of life. “I no longer have back pain,” he shared. “My relationship with my wife has also improved significantly; she shows me so much love now.”

Dr. Charles Wamboga, who leads initiatives against lymphatic filariasis in Uganda’s Ministry of Health, is inspired by the transformation he sees in patients. “Many come back to tell us about how they’ve reclaimed their lives—reconnecting with their families, gardening, even going to the market—activities they avoided before,” he said.

Initial efforts in Uganda started in the late ’90s, catalyzed by media attention to the stigma surrounding hydroceles. With ongoing studies uncovering the scale of the problem—estimating that between six and seventeen million were at risk—the focus shifted toward mass drug administration and managing the resulting health complications.

Despite these advancements, tens of thousands of individuals in Uganda continue to suffer from untreated lymphoedema and hydrocele. Dr. Olum emphasized the prevailing stigma attached to the condition, which is sometimes perceived as an indication of witchcraft. He noted that while increased awareness is prompting more individuals to seek help, many still avoid treatment due to fears of discrimination.

As of now, the WHO reports that 21 out of the 72 countries facing endemic lymphatic filariasis have successfully eliminated it as a public health issue. Jonathan King, a team lead for neglected tropical diseases at the WHO, recognizes the efforts made so far. “Since launching the elimination program, countries have made considerable progress,” he stated. “While there’s still work to be done, the achievements are promising compared to other neglected tropical diseases.”

Collaboration with pharmaceutical companies has played a significant role, with companies like GSK and MSD donating essential medications. “Their contributions have been invaluable, making a significant impact in our fight against lymphatic filariasis,” King added.

As for Okir, he remains hopeful and proactive. His son underwent surgery for a hydrocele as well, and Okir encourages others in his community to pursue treatment. “I wish I had sought surgery earlier,” he reflected. “Now, I feel liberated and grateful to be free from that burden.”