"Together we can"
The International Day of Rare Diseases took place on 28th February. More than 3 million Spanish people suffer from one of these 3,000 pathologies
The International Day of Rare Diseases took place on 28th February. In Spain there are over three million people who suffer from these kinds of pathologies (there are in excess of 5,000 classified), called "rare" due to their low incidence rates. At Caja Navarra we promote several projects to further research (link to text at the end of the report). In order to find out more about them and to get to know the people that suffer from them we have spoken to some of the main people involved. To Mikel Trueba for example, who fights against amyotrophic lateral sclerosis through his blog. Or to Tomás Castillo, whose son has cystic fibrosis and who, through his books, encourages us to view any disease with hope. Also to María Jesús Torres, who moves mountains to improve the lives of her hyperactive children. In Burgos, a centre that specialises in these diseases has just been opened. However, what most helps everyone is mixing with other affected people and giving each other support.
They are called "rare diseases" because of their low incidence rate or because they rarely appear in the general population, less than one affected person for every 2,000 people. It is estimated that today there are between 5,000 and 7,000 rare diseases and the majority are chronic and degenerative. In fact, 65% of these pathologies are serious and debilitating and are characterised by:
:: beginning early in life (2 out of every 3 before two years old);
:: chronic pain in 1 out of 5 sufferers;
:: development of motor, sensory or mental disabilities in half of all cases, which lead to a loss of independence (in 1 out of every 3 cases);
:: in almost half of all cases, the prognosis for survival is at stake, as rare diseases account for 35% of deaths before 1 year, 10% between 1 and 5 years and 12% between 5 and 15 years.
More information: Spanish Federation Of Rare Diseases