A year and a half ago, Renata Sorba published her book Neither different, nor identical, but free, where she wanted to tell what she experienced when she became blind. She gathered anecdotes, meetings, moments of her everyday life characterized by reflections and testimonies of the difficulties she had during her disease, Renitis Pigmentosa, which brought her to change and to undertake personal, working and sport paths, for instance she began to practice archery, and she became an Italian champion. In her book Renata also talks about the guide dog, a fundamental support for her independence.

Renata has decided to bring more visibility to her book by making it available also in an e-book version both in Italian and in English. Through the e-book version it is possible to bring all over the world her story and it is possible to make people aware of how a person with a sensorial disability lives and how he/she has to organize his/her life and the life of the people around him/her. People know very little about Usher’s Syndrome and about the problems a person has when you can’t count anymore on your eyes and ears. E-books are today an easy, cheap and useful tool to read, because reading is facilitated and adaptable to any type of low vision. This cultural and social heritage is enriched by the presence of an audio book, that allows blind people to listen to a story that can help meditate and open the mind for those who don’t know the diseases and the activities that Renata has told in her book. Thanks to the digital version, today a true and sincere testimony can enrich and widen a topic that just a few people have the possibility to know and examine.

Part of the proceed will be given to voluntary associations.      

The e-book versions are available from June 17th on the most important digital stores all over the world like Amazon Kindle, Ceebo, iBookstore, Kobo and a lot more. The audio book versions are available on every MP3 musical stores and programs like: Spotify, Youtube, Deezer, Amazon Music, Google Play, Napster.

You can also buy the book online on the website www.renatasorba.com

 

Renata Sorba

HOW IT DEVELOPS

Usher syndrome, considered a rare genetic disorder, was first described in 1958 by Von Graefe, but it was named after the Scottish ophthalmologist Charles Usher.

Usher syndrome is characterized by a congenital hearing loss associated with retinitis pigmentosa, that is to say a gradual deterioration of the retina. This syndrome affects 3.5 – 6.2 people out of 100,000 of the entire European population. About 3-6% of the people affected by a congenital hearing loss have the syndrome, but also18% of people with retinitis pigmentosa and 50% of people with both visual and hearing impairment have it.

There are three different types of Usher syndrome, based on clinical characteristics, hearing impairment and in some cases also balance loss.

 

Type I

People affected by Usher I are usually born deaf.

Sometimes they are not completely deaf, but they can hear just low frequencies; they also have problems with their balance because they don’t receive signals from their inner ear. At the age of ten they show the first symptoms of retinitis pigmentosa, photo sensibility (Picture 1, sensibility to light with the effects of dazzling),  and difficulties in seeing with little light (Picture 2, crepuscular blindness).

 

Type II

People with Usher II are born with a bilateral hearing loss that can be moderate or serious. Using a hearing aid they are able to hear and speak. Most of the times the hearing loss is steady; rarely there are people who completely lose their hearing. The degeneration of the retina starts during adolescence.

 

Type III

This is the rarest type, mostly known in Scandinavian countries and really rare outside of those countries. People affected by it are born without any hearing loss, but it starts during the first years of life, it is progressive and around the age of 30-50 it can be serious. The degeneration of the retina starts during adolescence (Table 1). Sometimes there are also balance problems.

ushersyndromeconventionsrecords.pdf
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Descrizione immagine

The idea of these pamphlets came to the A.P.R.I. association from the need to make people aware and to explain the reality and the problems related to this situation to the ones who ignore it. The visual impaired often finds himself in an intermediate condition, as for example: it could be possible that he can see a fly and right after he’s not able to see a wardrobe.

Episodes like these, everyday, make the visual impaired live a destabilization state and at the same time hinder the people who participate in his social life.

The main goal of these pamphlets if to teach people this condition and make them identify and share problems related to visual loss without falling in frivolities and rhetoric.

Our association is open to anyone who wants to talk and get closer to this unknown world.

The coordinator

Renata Sorba

Descrizione immagine

In a month it will be a year and a half that I live with Renata. My life with her is pretty intense and demanding, but funny!

She observes me a lot and she often laughs..she says I’m amazing! She is always comparing me to Rudy, she can’t help it. Rudy was my predecessor and Renata compares us not to see who is better or worse, but simply to study two completely different personalities linked by the same purpose. She says that when I do something is like I am playing, that I look sly but at the same time she trusts me. I am a lot different from Rudy: when I drink there is always water everywhere, when she puts the harness on me I always “dance” around her, when she calls me I am always sneaky, but if she has a biscuit or something attracting I run ot her right away! When it’s really hot I love laying down on the floor in the entrance, I love welcoming friends when they come visit with a lot of affection and wagging my tail. I am really sociable, in particular when I am at the park with other dogs, I am never aggressive, I am always communicative and if some of them growls at me I snub them.

My eccentric nature leaves Renata a little bit perplexed, but she is smart, and she tested me more than once and when I am guiding her no one can stop me! I am confident, careful and vigilant. Another thing I do is to lay down, on the bus, between Renata and the seat, since that time when we got really scared when a bus driver did a heavy braking, and since that day I’ve been protecting her and myself in this way. Another particular thing I do, when it’s really hot, when we are waiting for the bus to arrive I always put my head under a bench, if there’s one nearby..but when the bus comes I stand up right away and guide my owner on it. In a year and a half Renata got to know me really well, but she always amazes about something I do, I keep her really happy, for sure! She pets me a lot, she is really careful with my health, I understand her, after the experience she had with Rudy... but in the end she found again happiness and the joy of living with me! A lot of people say that I’ve changed a lot in this year and a half, I’ve grown up and wiser, but I still do the strange things I did before! The important thing is that I am always responsible and that I guide well.

Thanks to Renata and all the people who love me and who welcome us in their daily lives!

Asti, 12/07/2015

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