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.
If, as explained in a previous article, internet users use Facebook for an exchange of information and a quick confrontatio, we wish to point out the best web pages for those who want to integrate into the global Usher community, more from a virtually human point of view, rather than the purely scientific and medical ones.
The web pages listed here, in fact, are blogs, poems and stories of people who have to do with Usher Syndrome personally
The research was done obviously through the web, but fails to overcome the language barriers of Noisyvision editors who can not find pages in languages other than English, Italian, Spanish.
Who knows if out there in the WWW there is some good story in Turkish, Russian, Greek.We’d love to know.
(In alphabetical order)
I am a writer, information architect and photographer. I value active expression, and constantly seek new ways to engage with the world around me.
A genetic condition called Usher Syndrome Type II left me legally blind at age 31, and hard of hearing since birth. This means that I’ve grown up interacting with the world a bit differently, and have learned to use my different perspectives for creative inspiration.
I live in Victoria, British Columbia and love nothing quite as much as riding my bike out to many of the secret lakes in the hills nearby.
Not sure if Rusty_Coyote has Usher Syndrome. I hope she will pass by and tell us
Grove, Oklahoma, United States
Hi, I am a Deaf, legally blind mother of 2 kids, one boy 11, and one girl 9. I’ve been married 12 years to my wonderful husband, Randy
My dream of being a winning Olympic Speed Skater is not just for me. It doesn’t stop at coming home with a gold medal, it goes on to supporting others to accomplishing their dreams. I want to be a mentor, a role model to future goal achievers. Perhaps begin a foundation . .
Molly has usher Syndrome type 2 – this means Molly was born severely deaf then at age 12 she was diagnosed with retinitis pigmentosa (RP) an eye condition that causes night blindness, glare blindness and tunnel vision. The condition is progressive and to date there is no cure…
My life is “go with the flow and learn as many lessons from mistakes as I go”. I support ASL education and will forever advocate for the rights for humans and education for the Deaf Blind.
Mark Dunning is co-founder of the Decibels Foundation and a founding member of the Coalition for Usher Syndrome Research. He has a twelve year old daughter with Usher syndrome and a nine year old son.
Uwe Zelle | Freier Gebärdensprachdozent und Referent für visuelle Kommunikation
Free sign language instructor and lecturer in visual communication
About me (I do not dare to translate from German)
Did we miss someone? Do not hesitate to let us know. We will be happy to add it to the list.