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When children have a rare disease

When children have a rare disease


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The word rare sounds even more different and heterogeneous when related to a disease, right? Apart from the lack of information on these types of ailments, affected families feel the anguish of not knowing what to expect, how to live and sustain this reality.

This is how many parents of children with rare diseases feel, that is, with those andDiseases considered, for the most part, chronic and degenerative.

There are between 6,000 and 7,000 rare diseases, which together affect 7 percent of the world's population. Considering that, according to Spanish Federation of Rare Diseases, FEDER, rare diseases are the cause of death in 35 percent of children under one year, 10 percent between 1 and 5 years and 12 percent between 5 and 15 years of age, these diseases are still very little known. The prognosis of life is at risk in 50 percent of the cases of these diseases.

A disease is considered rare when it affects a limited number of the population. These diseases are characterized by being, for the most part, chronic and degenerative. In fact, 65 percent of these pathologies are serious and disabling. Two out of every 3 cases appear before the age of two years, 1 in every 5 patients experience chronic pain, and 1 in every 3 cases have autonomy disability. It is estimated that there are between 5 to 7 thousand different rare diseases and both the diversity of disorders and the symptoms vary not only from disease to disease, but also within the disease itself. What affects all of them equally is the difficulty in getting a correct diagnosis.

Being unusual, between the appearance of the first symptoms and a proper diagnosis can represent an eternity. Analysis, tests, visits to specialists ... all this implies misunderstood and unacceptable delays, and treatment does not always exist for all diseases. Apart from that, families of children with rare diseases have to face problems of social, school and work integration every day, since they are problems that can generate other difficulties such as discrimination, isolation, exclusion ...

All this, without counting the high cost of the few medications that exist that, added to the difficulty of reconciling work and children, can make family life compromised and deteriorated.

You can read more articles similar to When children have a rare disease, in the category of Childhood Illnesses on site.


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