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Which advice would you give to someone who has just been diagnosed with Usher Syndrome?
Advice for the newly diagnosed with Usher Syndrome, written by people who have lived it. What they wish they had known on day one.
it is not a death sentence
proceed to genetic testing to confirm the diagnosis
know your gene mutation and follow clinical trials and therapy development
get your hearing aids or cochlear implants to ensure audio verbal communication skills
connect with other usher individuals and their families 8positive role models)
proceed to genetic testing to confirm the diagnosis
know your gene mutation and follow clinical trials and therapy development
get your hearing aids or cochlear implants to ensure audio verbal communication skills
connect with other usher individuals and their families 8positive role models)
Posted Jul 3, 2018 by Usher Initiative Austria
I know it is very hard to be diagnosed with this awful disease and that it will have a great impact on your future life. But Usher Syndrome isn't the end of the road. I think one lesson would be the most important lesson you could ever get, focus on your ability - the awesome things you can be, or can do. Think big, not small. Other people have problems to. You are special and you have a great life ahead of you.
Posted May 8, 2017 by Rudo 1050
Neem je tijd en ruimte om de diagnose te verwerken
Wanneer je er klaar voor bent, verken en zoek mogelijkheden
We denken automatisch aan wat we niet meer kunnen, maar wat kunnen we nog wel? Zo ontdekken we dat er ook veel wel mogelijk is en van daaruit kijken hoe je jouw leven kan en wil organiseren.
Wanneer je er klaar voor bent, verken en zoek mogelijkheden
We denken automatisch aan wat we niet meer kunnen, maar wat kunnen we nog wel? Zo ontdekken we dat er ook veel wel mogelijk is en van daaruit kijken hoe je jouw leven kan en wil organiseren.
Posted Jun 17, 2021 by Deborah 2500
