Rare diseases are the invisible face of human pain, a life-saving suffering that is generally unknown to society and the medical and scientific community at large.
Rare or infrequent diseases are those that are characterized by their low incidence, given the general population, however, they are not isolated cases, since they affect 6 to 8% of the world population.
- This estimate includes up to 7.
- 000 rare diseases and the number of people with these diseases in the Western world is staggering: 27 million Europeans.
- 42 million Hispanics and 25 million Americans.
This should be very clear: this can happen to anyone, no one is safe from danger, when this happens, the person faces many problems.
Most rare diseases are chronic and degenerative, and 65% of these diseases are severe and debilitating, characterized by some of the following:
As the Spanish Federation of Rare Diseases states, “the physical, psychological, neurological, emotional and aesthetic consequences suffered by these people damage their relationships and contribute to the emergence of high-impact problems”.
It is not easy to talk and give visibility to these diseases because we end up very generalistic. The symptoms of each of them are very varied. There are, for example, no two equal cases of “lupus”.
It is very important to invest in programs to support people with rare diseases and their families. Patients need emotional support, accurate information, and material help.
Rare diseases are not only medical conundrums, they are also social and emotional conundrums that prevent millions of people from living normally and developing their life plans Fear, anxiety, depression?
We can’t find light at the end of the tunnel, but if we join forces and consciousness, we’ll find a way out together. There’s hope.