Being disabled means a big responsibility with yourself. You never stop to measure with the future and with others, with yourpossibilities but also your limits.
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When it comes to finding information in general, most people use the internet. Of course, it also applies to search for news, treatments, people associated with the diseases, in this case of Usher syndrome.
Read Almost all those who are suffering from rare and incurable diseasefeel the need to be in touch with others and find information on research, treatments, therapies and technologies, but in many cases the disease is so rare that it is not easy to meet personally someone with the same physical, psychological and social, conditions to exchange point of views, suggestions and experiences.
Read 25 June 2011
Psychological aspects related to Usher Syndrome. How low vision and hearing loss transform the personality
Writing an article about psychology in relation to disability, and in particular, to Usher syndrome is a challenge not to be underestimated.
Read 15 June 2011
When Usher Syndrome is a superpower. The considerations of a superhero with retinitis pigmentosa
Often when people hear about retinitis pigmentosa or Usher syndrome, they become sad, look down, they put a hand on your shoulder, and often say: “I’m sorry …” as if there was some grief to deal with; two of the psychotherapist I went, when I told them my night misadventures held a look, like when you see a dog without a leg, or a deadpigeon on the street, an abandoned kitten, something like that.
Read When I was about 23 I began to realize that soon I should put the driving license between the memories of the past.
Read 28 May 2011
How social media can help on disability
Social. It might seem that the relationship between social media and disability is implicit in the term, because often when we speak of social meaning socially useful.
Read In our Facebook page, which gradually increases its ‘Like’ we have recently opened a discussion in italian and one in english with the aim of collecting tips to survive with Usher Syndrome.
Read I have not managed to meet him personally, but have followed his adventures, read his stories, I looked at his photos and clips.
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