Our Dutch colleagues from LepraZending Nederland recently sent us a report on their visit to Sulewesi and Ambon in Indonesia this past November. The visit shed new light on the challenges facing leprosy patients in the region.
WHO figures show that Indonesia has 15,000-17,000 new recorded leprosy cases per year, the third-highest number in the world after India and Brazil. 90% of new patients have contagious multibacillary (MB) leprosy. Approximately 30% of patients already have some degree of nerve damage.
Delivering Essential Leprosy Education
LepraZending conducted essential training in Makkasar in Sulawesi, and again in Ambon. This included educating healthcare staff in rural clinics on how to recognise and treat leprosy (Dr. Diana Liben and Dr. Sri Wahyuni), and physiotherapy techniques for leprosy (Ton Schreuders). Dr. Iswahyudi, Dr. Francisca and Wim Theuvenet also performed hand surgeries on patients who had developed clawing as a result of leprosy.
“Teaching was a challenge because basic knowledge about leprosy has entirely disappeared over the past 30 years,” says Ton Schreuders. “If we want to eradicate the disease, this knowledge must be regained.”
Many patients have serious disfigurements or disabilities as a result of leprosy. There are surgical solutions available for these patients, but unfortunately, they often decline surgery because of concerns about aftercare and lengthy rehabilitation processes.
Challenges Facing Rural Hospitals and Patients
The group noticed unexpected challenges in treating the effects of leprosy. For example, at one hospital, clawing of the hands is corrected using plaster splints. However, the hospital didn’t have the proper scissors or saws to remove the splints afterwards; instead, they would soak them off. This was an eye-opening lesson in how easy it is to take well-equipped hospitals in the first world for granted. The LepraZending team has arranged for the proper scissors to be sent to the hospital, to help solve this difficulty.
The team also found a donor to provide an elderly patient with a new, properly fitted prosthesis for below her knee. This poor lady had to wear 20 socks layered over each other to get any support from her ill-fitting prosthesis, which caused a wound on her stump on one side and a severely infected foot on the other. Her insurance would not have replaced her prosthesis for another two years. LepraZending encountered numerous touching stories such as this one during the time of their visit.
“From our privileged perspective, it’s inspiring to face such meaningful challenges,” says Ton. “It’s amazing that so many people make this work possible in so many ways!”
Late Detection Leads to Complications
In Ambon, leprosy workers say that lack of education and fear of discrimination are major barriers to diagnosing leprosy early. This lack of early detection means patients often end up with complications, disabilities and/or disfigurements by the time they’re able to get treatment.
Wim says, “A significant challenge remains in finding new patients at the earliest stage of nerve damage. There is a substantial stigma and a serious lack of basic knowledge and resources. This stems from the WHO’s definition post-2006, suggesting that leprosy is no longer a ‘public health problem.’
We are proud that LepraZending continues to take responsibility by emphasizing education, reducing stigma, and tackling the wide range of issues faced by current leprosy patients every day.
We are convinced that leprosy can indeed be eradicated globally. There are several promising developments! However, the comprehensive care provided by LepraZending will likely remain indispensable for quite some time!”
Many thanks to the LepraZending team for sharing their inspiring stories and insights with us.