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NUCLEUS NEWS PUBLICATIONS TREATMENTS PARAMILOYDOSE THE ASSOCIATION
  • Associação Portuguesa de Paramilodoise
The history of APP

The Portuguese Association of Paramyloidosis (APP) was set up in June 1979 by a group of people involved in the problem of Paramyloidosis - patients, their relatives, doctors and other health professionals - with the aim of joining forces to improve living conditions of patients with Paramyloidosis and their families.

The paramyloidosis patients, who lived predominantly in the fishing regions of the north and center of the country, had very difficult social conditions in the late 1970s. With a predominant incidence in the fishing regions of the North and center of Portugal , in the late 1970s, Paramyloidosis patients, usually of poor social strata, lived in very difficult conditions.

Therefore, it was necessary to work together with those responsible for health and social security to help patients and their families. Due to the characteristics of the disease, with beginning in the 20-30 age group and rapidly evolving to death, could no longer work very early, depending on the spouses or children. Often of daughters who abandoned their life projects and became caretakers of one of their parents, usually a more capable and generous daughter who abandoned her life project to help her sick parent.

These patients, for the most part, didn’t have any reforms because they didn’t have enough years of Social Security discounts or had very low pensions and were in total dependency on their families. Even today we are witnessing this serious social problem. Using very low pensions or even not being entitled to them, because they didn’t deduct enough years, they were still in a situation of almost total dependence on family members.

Up until 1980, all medical care was essentially limited to the existing consultation at Santo António Hospital, which entailed enormous disadvantages for many patients scattered throughout the country.

Health professionals working with these patients were confronted with extremely serious human and social problems on a daily basis and didn’t have the means to solve them.

In this context, the APP is then set up by a group of people interested in improving the living conditions and assistance of paramyloids and their families. A group of people interested in improving the living conditions and assistance of paramyloids and their families creates the APP. The first four objectives of the APP were:

• Awareness raising of the Health Services to the problems of the PAF aiming at the creation of a program of assistance to the patients.

• Promotion and drafting of legislation to protect the interests of patients and their families.

• National survey of the number of patients and families affected in Portugal.

• Information and clarification to patients and their families about the characteristics of the disease, its transmission and modes of control.

The APP was provisionally based for many years at the Santo António General Hospital. Since 1992, it has been based in the parish of Caxinas, Vila do Conde municipality, in a space kindly provided by Vila do Conde Town Hall.

During the first 10 years, APP found to expand in areas of higher incidence of this pathology. Therefore, the nuclei of Póvoa de Varzim / Vila do Conde, Barcelos, Braga, Matosinhos, Unhais da Serra, Figueira da Foz and Lisbon emerged.

With a view to achieving these objectives, in the early 1980s, APP collaborated in structuring a local medical, nursing and social assistance program. Indeed, in 1980 the Directorate-General for Health appointed a coordinator for the Paramyloid Care Program, which, in collaboration with the Center for Paramyloidosis Studies (CEP) and APP, developed an assistance scheme based on the creation of a PAF valence in each Health Center of the most affected areas, where the Nuclei already worked.

In each Health Center the consultation was entrusted to a team formed by a doctor, a nursing element and a social worker. Their role was to provide care to patients and their families, including genetic counseling and family planning, as well as addressing major regional problems related to the disease, in collaboration with each local APP nuclei.

In addition to collaborating in the organization of care, the APP is also able to provide patients with Paramyloidosis with access to free medicines, carry out outreach, discussion and counseling sessions on the PAF. It publishes, as regularly as possible, an information newspaper distributed free of charge by all members.

Seeking even more benefits for patients by getting free allocation of clinical support materials, including wheelchairs, Canadian, orthopedic footwear, anti-sore cushions, urine collection bags and diapers.

Access to an invalidity pension under the general social security scheme is guaranteed to Paramyloidotics in January 1989. For the most needy patients, the APP distributes food baskets.

For many years, APP has provided a breakfast service for patients attending the consultation at the Center for Paramyloidosis Studies (CEP).

Assign scholarships for scientific and study work to various levels of teaching best students, children of Paramyloidotics.

Collaborates with the CEP in the purchase of material for research, therapeutic trials and treatment, such as: paraplasmaphoresis equipament and equipment for immunodepuration. Still within the same scope it collaborates with the CEP in campaigns of disclosure, genetic counseling, early diagnosis and prenatal diagnosis. To increase interaction with and between patients and their families, APP organizes patient gatherings at picnics and Christmas parties.

Still within the same scope it collaborates with the CEP in campaigns of disclosure, genetic counseling, early diagnosis and prenatal diagnosis. To increase interaction with and between patients and their families, APP organizes patient gatherings at picnics and Christmas parties.

For a better dissemination of the existence and operation of the APP and the problem of Paramyloidosis, it regularly participates in conferences, in reports made by local and national media and in regional fairs within the territorial scope of its Nuclei.

It also promotes national and international meetings for Health Technicians in order to keep these professionals abreast of disease evolution and research and treatment techniques.

In 2010, APP initiates a campaign to raise awareness among Portuguese government about the need to make available as soon as possible the drug that clinical trials have proven to be effective in combating the manifestations of Paramyloidosis: Tafamidis. This long and exhausting process has culminated in the availability of this medicine in the middle of 2012.

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