Schönlein-Henoch purpura, Hutchinson's Progeria or Marie's ataxia. They are not novels, nor premiere movies. We don't know what they are and we hardly care. It is true. It's like that ..
There are only 3 of the more than 7000 rare diseases that are known in the world. And not only against clinical uncertainty, but also against widespread social apathy, those who suffer them must fight. In our country, just over 3 million people.
The difficulty in obtaining an early diagnosis, translates into a significant delay in the application of medical treatments, and is the cause of the worsening of the disease in at least 30% of cases. It's not just a couple of weeks or months, we talk about an average of five years from the first symptom until the diagnosis is obtained. Time is worth gold, and more, if we talk about fighting a disease. So every day a battle is lost, it means the decline in the quality of life of these people and the worsening of their situation.
In addition, the diagnosis does not guarantee that there is a treatment against the disease in question. These are diseases that only affect 5 out of 10 thousand people, and it is this fact that makes it difficult for resources to be allocated for research. Consequently, the economic costs fall more heavily on patients and their families. A cost that represents a large part of the annual income of a family, because apart from medicines, you have to pay for transfers to specialized centers and, in many cases, personal assistance, because it is normal for these diseases to cause a loss of physical faculties and / or mental.
Beyond the numbers, there is another factor to reconsider with which we started this article. Apathy, discrimination and social rejection. A reality that only aggravates the plight of these people with problems such as depression and loss of self-esteem. A fact that leads them from bewilderment to despair, leaving fear, sadness and loneliness along the way. A swing of emotions that can destroy the most solid personality.
But there is something we can do and they are not donations. It is a small gesture that can become a great change for these people. A simple click is everything. Support the “PILOT PROJECT: RESEARCH IS THE STANDARD” and sharing it is the key to adding many clicks and that with this we can turn them into social financing to collaborate in the research and treatment of these rare diseases.
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