As today is a special day, February 29, which occurs only once every four years, we have wanted to dedicate this day to a very special group of people, and that is why today is the day of rare diseases, and I have wanted to make from here a small tribute to these little ones so forgotten. The years that are not leap years, this party will move to February 28. "A single day for unique people" It is the motto of this campaign.
They are unknown diseases that suffer a small number of people in the world (according to the European Union, they affect five out of 10,000 people) So they have a difficult diagnosis, and parents are passed from doctor to doctor continuously without knowing what happens. The worst part is that they do not have available treatments.
They would affect 7% of the world's population. In Spain alone, it is estimated that three million people may be affected by any of these alterations. There are between 6,000 and 8,000 rare diseases, of which 75% affect children.
Gina is one of these children. He is five years old and suffers from Rett syndrome, a neurological alteration caused by a mutation in an X chromosome gene, which causes epileptic seizures, mental retardation, communication disorders, difficulty walking ... affects one in 10,000 newly born alive.
But Gina is also the protagonist of a book written by her mother called "Creatures from another planet" whose sales are destined to investigate this rare disease. This book is edited by "La Magrana" and "Deria Editors" and is currently only available in Catalan.
It would be important that there were more people to help fight these diseases like Gina's mother. It is necessary to become aware of the existence of these rare diseases and that much research is still needed on treatments.
