Khartoum (SUDANOW) – Suad had a look on the soles of the feet of her young brother, while he was lying on bed to rest from a walk in the acacia forest, and noticed very small nail-like black pimples which she found were a bit hard. At first, he ignored her advice to see a doctor but he succumbed to her insistence and went to a nearby dermatologist who told him that those pimples were acacia hard thorns that transmit the dangerous flesh eating disease, Mycetoma.
The doctor, in three days of treatment, managed to prevent the disease from penetrating the body of the boy who is in fact indebted to his sister for saving him from grave consequences, the least of which would have been leg amputation, let alone the acute pain he would have suffered from.
Mycetoma disease spreads in central Sudan and parts of North Kordofan and North Darfur and is also found in a number of other countries. The disease is a chronic inflammation affecting the skin and is of two types- fungal mycetoma and bacterial mycetoma each one calling for a different medication. What is irritating about the disease is that the infection can be on the head, the hands, the legs or the stomach and can even reach the bones. It spreads by the blood and lymphatic glands and the infection is more dominant on men than on women, thus posing an economic problem because it attacks people of productive ages.
Although it is wide-spread and dangerous, this disease still remains unknown and badly neglected worldwide.
The Medical Director of Mycetoma Center in Wad Medani, Dr. Abdul Aziz Osman Abdul Aziz, told SUDANOW that in 2014 the Center conducted 149 operations, 131 of which were removal of fungal growth and 18 limb amputations, compared with 78 limb amputations in 2013.
Dr. Abdul Aziz said the infected people are of the 20-40 age group, most of them are either farmers or shepherds, due to the nature of their jobs. They are member of the poor class who have to be assisted by the Zakat Chamber for undergoing surgical operations in hospital.
He said the frequenters of the Mycetoma Center (the Specialized Fungal Growth Hospital) reached 554 cases of whom 272 were new and 282 old cases and the males comprised about 75% of the total frequenters from the various states of the Sudan by the end of 2014.
The situation in the Mycetoma Research Center, affiliated to Soba Hospital in Khartoum State, is even graver as the infection has risen to more than 7,000 cases. The Director of the Center, Professor Ahmed Hassan Fahal, said in an interview to SUDANOW that the patients who are not registered with the Center are much more than the registered ones from different parts of the Sudan. He explained that the Center was established to serve several goals the most important of which is the treatment of mycetoma patients from all parts of the Sudan as well as abroad”. There is a so-called mycetoma belt which stretches from Senegal and Mauretania, covers the Sudan and reaches India.
“We have numerous patients from Saudi Arabia, Yemen, Ethiopia and Chad and we have internet contacts and we offer medical advice to patients in Bangladesh and America” he added.
A second goal for establishment of the Center provides for conducting scientific research for reaching conclusions that may help in the treatment and prevention from the disease. The first research on mycetoma was carried out in the Sudan in 1904 and since then the research activities have continued and most of them emerged from the Sudan in 1918. Out of those research tasks was a very distinguished one which identified mycetoma into the aforementioned two types. There were also outstanding mycetoma research tasks in the 1970s and it can be concluded that the Sudan has greatly contributed to enriching the scientific research in this disease. Another main goal provides for carrying out activities community-wide for awareness and treatment of the people in the inflicted regions. There are also scientific, educational and cultural activities in addition to several scientific conferences which were organized in the Sudan and abroad. Yet another important issue is organization of training courses for researchers in mycetoma and for training health and medical personnel in the treatment of the disease.
Dr. Fahal emphasized that the main problem of the Mycetoma patients is that they are poor with health, social and financial difficulties and the treatment is extremely expensive, costing more than 18 million Sudanese pounds a year, an amount which the patient cannot afford and therefore he visits the Center once or twice.
Beside the costly treatment, most patients are confronted with the difficulty of reaching the Center and if they manage to reach, most of them do not have relatives in Khartoum and therefore they have no place other than the streets or mosques to sleep in.
Most of the patients are youths and children from the working class and, because the patient cannot work, his family spends on him and comes with him to the Center.
This squanders the human, financial and social energies and time of the individual patient and community and, moreover 30% of the patients are students who have to leave school and miss education.
“One major problem in Sudan is that if he is not treated, the patient will have his limb amputated and will live excluded, both socially and psychologically” Dr. Fahal said.
Despite all of these facts the Mycetoma Research Center has no budget of its own. It receives no support from the Ministry of Health, the Ministry of Higher Education or any other body, except from the University Hospital of Soba, which has a limited budget, and from a number of philanthropists, he said. “We have received an appreciable support from Professor Mamoun Humaidah and some companies offer support in the form of drugs and equipment”.
Although it is highly expensive, the treatment is not effective enough to eliminate the Mycetoma disease and has several side-effects. A patient may undergo this costly treatment and surgical operations for two, three or four years, paying an unaffordable 18 million Sudanese pounds each year and after he is discharged, he may come back to the Center in case the disease attacks once more. “We have an 18-year-old patient who stayed in the Center for three years during which he underwent 40 surgical operations and, after he was discharged, he came back to the Center because he got ill again” Dr. Fahal said.
In view of all this, the Center have embarked on new experiments for finding a new remedy but this is costly as, in order to start scientific experiments, you need at least half a million dollars. This is a big problem.
Moreover, there is no awareness of the disease. “Once we visited Owaidhah village in the White Nile State, in which we found 77 cases of the disease and, with assistance by a Japanese organization, we conducted 70 operations in one day” Dr. Fahal said.
He said there are numerous obstacles which hinder abolition of the disease in Sudan, the most important of which is a delayed reporting of the patients who just ignore the disease because it is not painful. Also most of the patients resort to using traditional drugs, add to this the fact that the region in which the disease is wide-spread is distant from the treatment center, while most of the patients are so poor that they cannot afford the ticket price, let alone the cost of the treatment, Fahal added.
Health observers say the disease has not been granted concern and support, whether domestically or internationally, wishing that it would be included in the map of the globally ignored diseases which are supported by the international partners and by the ambassadors of the European Union and America. They believe that such an international support would enable the poor patients to obtain free drugs in addition to supporting infrastructural operations and training of personnel for finding a major breakthrough for elimination of, or controlling the spread of the disease among the producing elements because it threatens the productivity and, ultimately, the development and aggravates poverty of the poor.
E N D