AGHBALA PROJECT

SUMMARY OF THE PROJECT

Aghbala Project is a project of international cooperation aimed at developing a comprehensive programme of social inclusion and health care for the physically and mentally disabled in the regions of the Middle Atlas in Morocco

BACKGROUND

Nousol was moved to Aghbala to initiate the project Inch’Allah, Chaima, which had as its main objective diagnosing the rare disease of a five-year-old girl.

Through this case Nousol was got in touch with Aghbala Association of disabled people. After several meetings where they saw serious deficiencies patent about how are exposed the disabled in the area of the Middle Atlas, an special environment with very specific characteristics.

After much effort, in February 2014 it was obtained diagnosis of Chaima Baalil, Glutaric Aciduria type I . Aciduria is a genetic and hereditary disease that affects the metabolism. Once diagnosed the disease and known its main features more cases were indentified of the same disease in the area of Middle Atlas.

Currently, Nousol is carrying out a research project with the collaboration of San Joan de Déu Hospital in Barcelona, under the coordination of Dr. Belén Pérez Dueñas, to be able to identify and treat more cases of the disease in this area of Morocco.

JUSTIFICATION

The regions of Aghbala, Boutferda and Tizi n’Isly are located in the Middle Atlas mountain chain in the State of Beni Mellal. These counties are located on a plateau that is located at 2,000 m above the sea level. There are villages to more to 2,500 m above the sea level. The winters are rigorous with persistent snow above 2,000 to 2,500 metres with a very high rainfall. Summers are hot and dry. The thermal contrast is very significant. Highways to get are very damaged by sudden floods coming down from the mountain, and the continuous snowfall. The predominant economic activity is livestock and to a lesser extent, agriculture. It is populated mostly by ethnic Amazigh (Berber).

There live approximately 100,000 people, most of them live in small communities scattered throughout the mountains. Their family economy is based on livestock and agriculture, and on the financial support they receive from your family members that emigrated to Europe. The social context is special, in that the population is basically Berber. Most are illiterate and don’t even speak Arabic, the predominant language, nor French, colonial language. This causes a great difficulty to communicate or make any official procedure, and have to opt for unskilled jobs. The practice of marriage between cousins is widespread due to the difficulty of access, and cultural features Berber.

The inbreeding is evident in a high rate of people with physical and mental disabilities due to genetic problems.

The situation of these disabled physical and mental is really worrying, as can be seen from the analysis carried out with members of our counterpart, and have to deal with it with urgency.

Many disabled people live in remote and inaccessible places, and have no financial ability to scroll.

In this area there are only the centers of primary care in Aghbala, Tizi n’Isly and Boutferda that can not meet serious cases or require a particular specialist. The nearest hospital is in Kashba Tadla, located three hours from Aghbala road. The most serious cases are referred to hospital of Beni Mellal, the capital of the region, where there are all the specialists. This hospital is located more five hours of Aghbala.

To geographical context is added to the bureaucratic procedure to register as a disabled in the Moroccan health that is very complex. First, the disabled have to go visit their family physician who facilitates they a certificate medical because they have a disability. With this receipt will go to the Association of disabled people corresponding, in our case Aghbala, to sign up to the register of disabled persons of the Association, and they will receive a card as disabled person.

Once enrolled in the Association, it is made to delivery of an official document from the Ministry of Moroccan health, called Medical Dossier. When they have this document, they have to return to the primary care center, where your family doctor makes them an initial medical examination. The doctor in question, registers and certifies the results of this first examination in the Medical Dossier. The next step is to go to the hospital in the capital, Beni Mellal, where a medical tribunal formed by five different doctors will study the case, and shall certify the degree of invalidity. The degree of disability and the results of the medical tribunal, shall be recorded in the Medical Dossier. Finally, they have to present the Medical Dossier to Association of disabled people, since they will be those who are in charge of official form, to present the Medical Dossier to Ministry of health of Rabat, where the patient will be registered as disabled person. The Medical Dossier would be the closest thing to a diagnosis.

This procedure is extremely difficult for the people of the area because they do not have the necessary information, or economic resources, nor the time to perform these steps. For this reason the majority of disabled persons are not registered or in the Association of disabled people or in the Ministry of health.

In reference to the social context, disabled people in the area are excluded from public life, labour and educational. There is a great ignorance of the treatment they need these people by professionals from the Association of disabled and also schools. They do not have sufficient training and resources to provide good care to this group. Many of the disabilities are given by the ignorance that there is of the body and the consequences that may have a small lesion, if it is not treated properly. There are many families with people with disabilities seeking answers in doctors and healers in the area who do not have sufficient training to give reliable information.

The families spend a lot of money on this process, which has resulted in the impoverishment of the family, and the non-solution of disease. It is here where take importance the collaboration of the hospital Sant Joan de Déu de Barcelona with his experience and expertise on rare diseases, and the research of these diseases in patients of Aghbala.