Podoconiosis: Help for people with a neglected disease

Maike Stelter

Podoconiosis belongs to the most neglected diseases according to the World Health Organization (WHO). This type of elephantiasis mainly affects people who walk barefoot in endangered regions. Shoes play an important role in prevention and therapy, as our report from Ethiopia shows.

Podoconiosis is a non-infectious type of elephantiasis. It is also called endemic, non-filarial elephantiasis, “Mossy Foot” disease, elephant foot disease or “Morbus Price” disease. In 2011 the WHO included the disease officially as one of the most neglected diseases in the world.Podoconiosis occurs in regions with special geologic and climatic factors. These are regions with red soil of volcanic origin, where the soil is rich in silicate and where there are seasonal rainfalls. These regions are in the highland of tropical Africa, in Central America and Northern India.
Podoconiosis is caused by micro-particles in soils with high laterite of volcanic origin. These particles penetrate the intact skin of people walking barefoot and reach the subcutaneous tissue where they can lead to an inflammatory process. The legs swell, get infected and develop a strong odor.In Ethiopia podoconiosis is a disease of the poor rural population. People walking barefoot and who are in contact with the volcanic soil in the highland are endangered. About one million of the four million affected people worldwide live in Ethiopia. The disease not only leads to painful inflammations and immobility. Stigmatization, exclusion from the job market and all social contacts are often the consequence.Not every person walking barefoot in Ethiopia develops podoconiosis. Also a genetic factor plays a role. The minority of the people walking barefoot with a genetic predisposition develops the inflammatory reaction resulting in podoconiosis. Mostly the poor rural population is affected, mainly farmers, but also miners who have to work barefoot due to poverty. Shoes are an unaffordable luxury for most people living in the country. It is also difficult to find robust and resistant as well as completely closed shoes in the rural regions of Ethiopia.

What are the symptoms?
Podoconiosis is a disease that manifests itself by massive swellings of feet and legs. The disease is more frequent in women and usually begins in the second decade of a human life.
Often the initial symptoms are burning feet and legs, light swellings of the middle toes, itchy feet, mycosis and bacterial infections of the affected skin, rough, thick skin, sometimes with wart-like exostoses, grey colored skin and strong, unpleasant odor.If nothing is done in the beginning, podoconiosis can advance. There are strong, painful swellings of the feet up to the knees, the inter-digital areas of the toes grow together and fever attacks and inflammations can occur as a consequence of inflammations of the lymphatics.

What are the consequences of the disease?
Podoconiosis has manifold consequences for the patients and their families. On the one hand often economic consequences develop: The afflicted persons cannot carry out their daily work and tasks within the family. Since for example employers are afraid of contagion, many of the patients in addition lose their work and sink into poverty. Studies show an average loss of the working power of 45 % per year due to the disease. On the other hand there are social consequences: The patients often live as outcasts. Reasons are the odor of the inflamed skin, but also lacking information about the cause of the disease. Once stigmatized by podoconiosis, the patients are discriminated, mainly for fear of infection. Some ascribe the disease to “witchcraft” or a curse, others believe they will contract the disease when using the same wash bowls. This lack of knowledge often leads to a treatment of the patients as lepers: Patients are too ashamed to go to churches, mosques and other social get-togethers. Children and adolescents do not go to school anymore, it is impossible or extremely difficult for them to get an education. Nobody wants to marry into the affected families. Podoconiosis often is a “hidden disease”, because families keep the patients hidden in order to prevent humiliation by the community. Due to the fact that they are also rejected by the health care system of the government, they are caught in their dilemma, without any hope for a way out. Without help they are predestinated to becoming the poorest of the poor.

How can podoconiosis be prevented?
The most important measure for the avoidance of the disease is to wear socks and protective, solid shoes, preferably made of stable leather. Prevention is also an enormously important starting point in the fight against podo.If the first symptoms can already be seen, it is important to stop the progression of podoconiosis. This can be done by the daily washing of the feet with soap and water and the appliance of antiseptics and emollients. Also compression dressings lead to a continuous improvement of the symptoms.

The history of Podo e.V.
In 2011 Podo e.V., awas founded by people who made it their business to commit themselves to fight the foot disease in Ethiopia. All club members of Podo e.V., which is located in Germany, know the disease and people afflicted by it through their trips to Ethiopia and got to know the local self-help structures already existing. Many members in Ethiopia used to suffer from podoconiosis themselves and would now like to support other people in their fight against the disease. This way we could find out very directly that not much is needed to fight podoconiosis.The central person is our project manager Christel Ahrens, who lives in Ethiopia and in Germany and who coordinates the work of different teams in Ethiopia and who is the interface for the association. The work’s principles are the closeness to the basis through community-supported groups, information and encouragement to self-treatment, cost sharing and production of local soaps, oils and shoes. This way an economical project has developed that does not produce any new dependencies. Among others, nurses, a shoemaker, a bootblack, a lab technician, a cleaner, two special education teachers and one person from the church administration belong to the team. Over the years three podo centers were founded in Western Ethiopia with the help of the association, in Chanka, ljaji, Tschallia. In these centers there are regular self-help meetings where people are told about the disease and its causes and about the treatment options. This way the (self-) stigmatization can be reduced. Additionally the various steps of foot hygiene are carried out together and materials for the treatment of the feet are distributed. The state of the feet is documented in order to detect changes. In 2018 two more centers, in Dabasso and in Mettu, will be established. In these podo centers there is also a soap production and a soap sale, en element enormously important for the observance of the foot hygiene.Since people afflicted by podo especially suffer from the social exclusion and stigmatization, Podo e.V. and local helpers carried out information campaigns in schools in order to inform children and adolescents about podo with the help of posters, flyers and lectures. It is important to communicate that the patients are not to blame and that the disease is not contagious. Furthermore these campaigns have the aim to communicate to the pupils how they can protect themselves from podo and to do so in time before the first manifestation of symptoms. So far about 50,000 pupils could be reached. Due to the unrests in the last two years, the information campaigns had to be cut back, but in 2018 they are going to be carried out once more increasingly.More information about Podo e.V.: www.podoev.net 

Shoes for “podo”-feet
In 2014 a shoemaker’s shop was established in ljaji, where Getu Yasin and his four co-workers produce high-quality shoes designed for the special requirements of podo patients. All materials for the shoes are from Ethiopia. Due to donations to Podo e.V., these shoes can be given to women with podo at a reduced price at the podo centers.Getu Yasin is not officially trained as a shoemaker. In Addis Abeba, the capital of Ethiopia, such a training exists, but apprentices are required to have 10 years of school education for that. Getu Yasin however only could go to school for seven years. He made a living as a listro (shoeshine boy) for a lengthy period of time and also made small shoe repairs in doing so. In five different shoemaker’s shops he made short internships – usually only a day – and learned a lot about shoemaking. Basically Getu Yasin learned by doing.He has enormous craftsmanship and was able to start on his own to measure the big feet of podoconiosis patients and to trace on paper the circumference of the forefoot at two spots and then the circumference of the foot when it treads. Most shoes are costum-size. He worked out and manufactured himself the molds for the sizes 46-48. It proofed to be difficult to get the right material for the soles of the shoes, since colleagues often do not want to talk about their trade secrets. Other than that he uses leather that is used for shoemaking, of which there is a lot in the country. He does the purchasing by himself, all products can be bought at the big market in the capital, the Merkato. The material costs per shoe are currently about 5 Euros per pair.Initially everything was hand-made, meanwhile the association owns a leather sewing machine, a furnace to heat up the soles, a sanding machine to roughen up the leather and some other machines. This makes the production of the about 1000 pairs easier that Getu Yasin and his co-workers produce per year.