What does it mean that something is “weird”? In the health field, for example, this term has been used to classify a group of diseases whose incidence rate in the population is limited. Specifically, the so-called ‘rare diseases’ are those that affect less than 5 people per 10,000 inhabitants.
However, do not be fooled by these figures, as they diminish a problem that, in reality, affects more than 3 million people throughout Spain . According to the World Health Organization (WHO) there are more than 7,000 types of diseases with these characteristics, which translates as 7% of those affected worldwide.
The features in which rare diseases are framed are, in general terms, multiple health, social, psychological, educational and work problems. Most of them have an unknown origin and both their difficulty in diagnosis and follow-up mean that an effective treatment is usually lacking . In fact, there is a large deficit when it comes to epidemiological data.
The information presented by the Spanish Federation of Rare Diseases (FEDER) denounces that the estimated average time that elapses between the appearance of the first symptoms until the achievement of the diagnosis is about 5 years. However, in one out of every five cases the situation is worse and it may take 10 or more years to achieve a proper diagnosis. The delay in diagnosis has various consequences, among which the most frequent is not finally receiving any support or treatment (almost 41% of those affected approximately). Another of the most common consequences is not receiving adequate treatment or the worsening of the disease.
About 40% of people with rare diseases are forced to leave their provinces to seek medical treatment that is tailored to their needs, although surveys also reveal that almost half of patients are dissatisfied with health care that they receive because of their illness. 72% consider that at least once they have been treated in an inappropriate way by a health professional as a consequence of their disease, mainly due to lack of knowledge about it.
However, when one is part of the lucky percentage with a clear diagnosis and treatment, those affected face a greater problem, the high economic cost . And it is that, if already basic, the tests carried out previously suppose a high investment, the average treatment can suppose an expense of € 350 per family per month , 20% of the annual expenses of a family nucleus and that, to day Today, not everyone can afford to cope.
Since the beginning of the crisis, the sector that encompasses science, research and innovation has been the great victim of financial cuts, and consequently, so have those affected by rare diseases . The budget reductions for these grants have aggravated the initial problems and considerably reduce the limited opportunities for these people to improve.
A disease is a crude and complex reality, not only from an economic, political and scientific point of view, but also from a social perspective . Therefore, it is essential that these are visible to the rest of the world. Every February 28, the International Day of Rare Diseases is celebrated to commemorate and highlight the situation of all those who suffer directly or indirectly the effects of a rare disease. In Spain it affects about 3 million people, throughout Europe there are between 27 and 36 million affected and worldwide, the figure is even higher. In this gallery, we make a small part of these anomalous alterations visible.
