When I was younger, I did not want to know anything about my disease, the Usher Syndrome.
I thought and still think that I am able to adapt to normal life if I do not get used to additional devices like special TV headphones or a microphone for my teachers at school which would be connected to my hearing aids through bluetooth.
I still do not want or need any devices in addition. But I got interested in my disease. How come?
I have the feeling that my sense of smell is stronger than average. Human senses are complementary: Individuals like myself who suffer from the Usher syndrome are limited in hearing and vision, and therefore the remaining senses become more developed.
Related to this, I read more about human senses and finally ended up in internet surfing on the Usher Syndrome.
That was the moment when I was "ready" to be more openminded to detailed information about my disease.
'We do not want to see less stars and hear less birds with every day we wake up, we do not want to end up deafblind', I thought. I want to promote research for the Usher Syndrome effectively and continuously.
I can not live with the thought that there might still not be a cure for the Usher syndrome in 10 years and I did not do anything to support the search for a right treatment.
For that, I connected with the German Foundation PRO RETINA and the Canadian Foundation Fighting Blindness to support some chosen research projects, which are interesting for a cure to the Usher syndrome.
I named this international call to action: USHER BRIGHTNESS.
Thank you so much for any support.