G3_Work in progress

Micro architecture:

Body movement restriction (speed and turning) and psicological burden of other´s people look

CHRONICLE OF A MEETING

On Monday, the 27th of October we manage an appointment with the center AHEDYSIA (Humanitarian Association of Degenerative Diseases and Syndromes of the Infancy and Adolescence), and we could approach to visit the facilities and to know some of affected by the degenerative diseases, concretely the Distrofia Muscular.

The center, opened from 1999 and directed by Antonia, works with children and teenagers who suffer different diseases and with some adult who only finds cover in a center as familiar(family) as this one in kilometres around. Its principal labor is not the physical rehabilitation of the affected ones, so the degenerative diseases have few solutions a today, but it works to emotional level and every person who goes into this center ends turning into one more relative of, as they say, " this small great family ".

Before knowing young people affected by the chosen disease, they were steeping us of information about the degenerative diseases and about the multitude of variants that in these, since into a small variation into the genetics it changed the degree of the disease or the own disease. Once learned the general concepts, we centred on the muscular distrofia and they were speaking to us about the patients of this disease of their center and the situation of their families, which took us to a following step, day after day of a patient and his family

Beginning from the moment of his/her birth, the most complicated thing is the diagnosis, sometimes for medical failure, for ignorance or because it is not perceived so simply. Once diagnosed the patient is treated as a clinical way by the doctors and the important of AHEDYSIA, is that they treat the patients as people, so for them we all are equal. The psychological factor begins on the parents, they are the first ones that have to confront this situation, or as they say in the center, this opportunity to learn more of the life and of people. Often problems arise in the familiar core and ultimately it ends in breaks that divide the family and complicate more the care of the children, both for the physical level and for the psychic one of exigency for the one who takes care of it, and we have to rely on the economic factor of the care of a person that needs more normal things.

But the main problem is when the child begins to be aware of what is happening around them:

"Why I can not do what the other children?"

"Why have you made ​​me thus?"

"Why do I have to go to the doctor so much?" ...

"Am I going to die?"

There are usually social problems, his(her,your) condition is not accepted always equally and often there can not be related to the society, in other cases for fear and for overprotection on the part of the parents, which carries to a more rapid degeneracy of the disease, since the psychology concerns deeply the physics of the individual

We were lucky to know a member of this association, we will call her A. Initially we didn’t know how to react with her, as if we had to act in a different way on having manner with a person that was suffering a disease like that, until we realized that she was who treated us as normal and current person, which made us to see that there was no so many difference between us and that we could be a group of people seeking to spend good moments united. It was a great learning for us and it gave us the step to think about many things, not of the disease and its patient, if not on life.

To finish, I must say that, as a general rule, we usually think that these people are destined to suffer, that has not sense to fight for such a lost reason and that we are lucky for not suffering this way, but the nice thing of AHEDYSIA is that they consider theirselves "lucky", because they are people who have big challenges that humanize them, that makes them to see that we all are equal and that we must fight, for us and for those that surround us, I mean, to be a person.




http://www.ahedysia.org/
https://www.facebook.com/ahedysia.humanitaria?ref=ts&fref=ts