The Artificial Limbs Prosthesis Mission to Endemic Villages in Eastern Sennar, Sudan.
Mycetoma is the most neglected of the neglected tropical diseases affecting the poorest of the poor in poor, remote communities. It is reported worldwide but endemic in many tropical and subtropical regions in what is known as the mycetoma belt, and Sudan seems to have the highest endemicity. It affects all age groups, but children and young adults of low socio-economic status are affected most, leading to serious medical, health, and socio-economic bearings on patients, families, communities and the health authorities, particularly in endemic areas.
Mycetoma is commonly seen in communities with poor hygiene and environmental conditions where the population live in proximity to animals and their dungs. It is believed that traumatic inoculation of the causatives microorganism via thorn pricks and minor injuries is an important route of mycetoma infection. This is supported by the facts that mycetoma is seen more frequently in the feet of patients of low socio-economic status, with poor hygiene and in villages with animals’ enclosures made of thorny trees.
Most patients present late with advanced disease and serious complications, and the cause is multifactorial. The painless nature of the disease, patients’ low health education level and low socio-economic status are important factors. Furthermore, the late presentation is due to the scarcity of health services in distant, isolated endemic areas. Hence, patients tend to travel from their remote localities to central specialised centres for diagnosis and treatment. This causes a high financial burden on patients and families and delay in treatment initiation. Moreover, the disabling nature of the disease hinders access to healthcare service for the majority of the patients. The Late presentations often necessitate amputation or destructive surgical excisions resulting in massive disability and deformities.
Usual mycetoma patients need prolonged periods of management involving diagnosis, treatment, both medical and surgical and regular follow up. Treatment may last at least one year for the minor lesions to resolve and several years for large lesions. Even after full recovery, patients need to be followed up closely for evidence of recurrence, which is not uncommon.
Currently, there is no point of care diagnostic test for mycetoma, and thus patients need to travel to specialised centres to establish the diagnosis and treatment. The available therapies have proved ineffective and expensive, with a range of side effects and a high recurrence rate, particularly for eumycetoma. Its cure rate is low (28%), and the patients follow up dropout is high (54%). Patients require long-term follow-up to monitor recovery and recurrence.
The rate of amputation in mycetoma is high, and it ranges from 10-30%. Amputation in developing countries is a social stigma, has various socio-economic and psychological impacts on patients and their families and communities. It is an important cause of poverty and economic loss in endemic areas. Students tend to drop education, and workers and farmers lose the jobs. For females, amputation put them at the end of their social lives and, it will be difficult for them to get married, and many got divorced. Many of the amputees start to move around, begging to earn a living. Some of these amputees use poorly designed of local primitive material self-made prostheses. These prostheses are heavy, difficult to use and are ugly and not socially acceptable.
With this background, and as part of the holistic patients’ management, the Mycetoma Research Centre, in collaboration with the Ministry of Health, Sennar State, and EL Zaki Fund, had launched a national campaign to provide free artificial limbs prostheses for mycetoma amputees in endemic villages in Sudan. A mobile artificial limbs prostheses workshop equipped with expert technicians team, equipment for prosthesis manufacture and physiotherapy, and row material was moved to the Mycetoma Satellite Centre at Wad Onsa village, Eastern Sennar Locality, Sennar State, Sudan, one of the high mycetoma endemic villages.
The team was well received at the village by the amputees, villagers and the local authorities. They spent three weeks in the village and managed to provide prostheses for 160 amputees, and some had bilateral prostheses. They had provided training and physiotherapy for the amputees
The prostheses had huge impacts on the lives of the amputee and their families. Some students resumed their education, and most of them continued their normal daily activists alone. The campaign had alleviated the financial burden on the amputee and their family as most of them cannot afford the prosthesis cost, travel to and accommodation at big cities where the prostheses producing centres are.