Around 1.3 billion people (16% of the world’s population) suffer from some major disability, according to data from the World Health Organization (WHO). On the occasion of the International Day of People with Disabilities, the experts from the Spanish Society of Rheumatology (SER) have recalled that rheumatic diseases are the main cause of physical disability in Western societies and the second most frequent cause of work absenteeism, since They are responsible for 24% of temporary disabilities and 50% of permanent disabilities, as indicated in a press release.
“These data are very striking, since they represent losses of millions of days of work in Spain and cause a high cost in developed countries, including direct and indirect expenses,” says Dr. Marcos Paulino, president of the SER, who highlights that “in our country there are 11 million people with rheumatic diseases, being the main cause of retirement due to illness, which represents a great socio-health cost. In addition to the emotional and personal cost for the patients who suffer from them.”
Make rheumatic diseases visible
In 1992, the United Nations General Assembly established the International Day of Persons with Disabilities, with the aim of promoting the rights and well-being of people with disabilities and raising awareness about their reality in the political, social, economic and cultural spheres. In this context, the SER has reaffirmed its commitment to raising the profile of rheumatic diseases, and especially those of the systemic autoimmune type (ERAS) and autoinflammatory diseases, which represent an important cause of disability in Spain.
During the ‘ReumaTalks’ conference, the SER, in collaboration with 10 patient associations, presented a consensus document that highlights the need to advance in the diagnosis and treatment of these diseases and dedicate greater attention to the work and educational needs of patients. affected.
Autoimmune and autoinflammatory diseases are complex and poorly understood and are also underdiagnosed. Cuca Paulo, president of the Spanish Association of Familial Mediterranean Fever and Autoinflammatory Syndromes (STOP FMF), insists on the need to make these diseases and the invisible disability they produce visible and emphasizes that “the lack of recognition, invisibility and misunderstanding “They are the main problems that people with organic disabilities face, as a consequence of being alterations that originate inside the human body and go unnoticed by the majority of the population.”
For this reason, he continues, “people with autoimmune and autoinflammatory diseases have problems when looking for a job and keeping it. Furthermore, it is difficult to obtain empathy from companies, human resources managers and co-workers as these patients appear healthy despite their health problems. Rarely is a job adaptation granted to people with these pathologies, which makes it difficult to maintain the job and increases the chances of precipitating work disabilities. There should be greater information and contact between companies and patient entities.”
“Lack of recognition, invisibility and misunderstanding are the main problems faced by people with organic disabilities”
The consensus document highlights the need to train professionals in charge of evaluating disability reports on ERAS, given their complexity. In the words of Dr. Paulino, who is also head of the Rheumatology Service at the General University Hospital of Ciudad Real, “the SER is willing to collaborate with Public Administrations to develop training materials in this area.”
The manifesto proposes establishing uniform criteria to assign degrees of disability and reduce inequalities between autonomous communities. It is also proposed to make the requirements for accessing a minimum pension more flexible and to develop materials that allow companies to understand and adapt jobs for people affected by these diseases.
Inflammatory diseases also affect children
Specialists have also insisted that the misconception persists that inflammatory diseases only affect adults, when children also suffer from them. For this reason, STOP FMF proposes “a psychosocial intervention in the minor’s family, school and social environment, with the aim of learning to live with the disease and self-care, as far as possible, as in adult patients. ; in addition to facilitating coexistence and learning in educational centers and preventing premature training abandonment, since little training makes it even more difficult, if possible, to access a job.”
For all these reasons, they conclude that this day is a great opportunity to raise awareness among all social actors about the importance of addressing these diseases in a comprehensive manner, promoting a more inclusive and supportive society.
Source: Spanish Society of Rheumatology (SER)