It is not difficult to find out what is Usher Syndrome. Just type in the name on a search engine and thousands of pages that explain what this disease will be displayed. In this site you can find a good summary.
However, the answers to this question are almost all given by a clinical point of view and those who provide informations are often doctors or somebody linked to medicine.
The answer provided by deafblind.com, a site for information on deaf-blindness, is clinical as well.
In short, it is indeed a major cause of deaf-blindness, which is manifested in a more or less severe way. Deafness is present at birth while the visual degeneration varies from case to case, with the progression of retinitis pigmentosa, till blindness.
It is clear that this is a very serious and crippling disabilities for many aspects, especially because it affects both the senses of communication, the receivers of inputs. Together with touch, hearing is the main aid to compensate the limitations of blindness and vision helps the deaf in communication. If both are impaired the problems get worse.
One of the aims of Noisyvision is to inform about what it means to be an Usher, and then answer the question What is Usher Syndrome from the viewpoint of the person.
Usher Syndrome is therefore not just a disease. It ‘s a way of being.Most probably this applies to any disability, but even if I do not know all the possible disabilities, there are some that are commonly known, and many that are recognizable.A deaf, a blind, a mute, a sclerotic do not need to explain their limitations.Usher seems a normal, especially type 2.
An invisible disability, which invalidates slowly, giving the illusion of being able to lead a normal life, but instead, slowly, you have to change some behaviors, habits, and make hard sacrifices..
Telling this all means to give to other a proof of the difficulties, and demonstrate to other Ushers or not that you are not alone in your daily problems and in life choices. This is the real challenge, because even if it’s good not give up hope that one day it will be possible to heal or stop the disease, we must face the days with the limitations we have without counting on impossible mirages.
Each of us has a way of seeing and feeling, but if the senses senses are normal you might believe that everyone sees and hears like you. Usher Syndrome is the awareness of the unique way of seeing and hearing. It is tangible and constant eveidence of the uniqueness of the individual.
