Rare Diseases: The Invisible Pain Of Millions Of People
Rare diseases are the invisible face of human suffering. Ailments that take lives and are generally unknown both socially and in the general science and medical communities.
Strange or rare diseases are those characterized by their small extent compared to the general population. However, they are not isolated cases; in total, about 6-8% of the world’s population suffers.
Up to 7,000 rare diseases have been linked to this calculation. In the West in particular, the number of people with one of these diseases is quite freezing: 27 million Europeans, 42 million Hispanics and 25 million Americans.
That can happen to anyone; it is not strange to suffer from a rare disease
No one is free from danger. This should be very clear: this can happen to anyone. When this happens, a person faces several different problems.
The very first problem comes with diagnosis. There are three main reasons for this: these discrepancies are surrounded by a lack of information; it is difficult to access the necessary information; the location of professionals and centers of expertise is difficult. If you don’t have a diagnosis, it’s not because you’re invisible; it is because there is no diagnosis yet.
This affects both the patient and those close to him. This delay makes it difficult to start treatments at the right time.
In addition, in many countries, such as Spain, more than 40% of people suffer from these diseases without proper treatment. Understandably, this puts enormous stress on those concerned, exacerbating the consequences of social discrimination that results from the misunderstanding that surrounds them.
(World Rare Diseases Day)
Opening our eyes to the invisible
Rare diseases are chronic and degenerative over a wide range. In addition, 65% of these diseases are serious and debilitating and are characterized by some of the following details:
- Early onset: data suggest that two out of three appear before age 2.
- Chronic pain: Persistent pain occurs in one in five patients.
- A motor, sensory or intellectual deficit occurs in one in three.
- In about half of the cases, the patient is given a life expectancy. 35% of deaths occur during the first year of life, 10% at 1-5 years of age and 12% at 5-15 years of age.
Creating networks that bring hope
Achieving visibility is not easy because the discussion of rare diseases is often too common. This is important because, among other things, the onset of each disease is very different. For example, two different systemic lupus erythematosus cases are not similar to each other.
Among other things, the family and the patient need a lot of mental support and the information should be as clear as possible.
Rare diseases are not only medical riddles, but also social and mental puzzles that prevent millions of people from developing their own lives and their own projects. Right now we are in a tunnel where there is no light, but if we combine our strengths and consciousness, we will find a way out together. There is still hope.
More information on the topic: http://www.harvinaiset.fi/
