Deadblindness; a life where it is dark and quit | Lotte Klaver | TEDxVeghel

At the age of 17, you are told that you have Usher's syndrome, a genetic disease. Not only you, but also your youngest sister gets the same, horrible message. The Usher bomb has been dropped and suddenly becomes part of your daily life. Every day your vision and hearing deteriorates. Silence - darkness. What is Usher? Is there a cure? What can be done about it, but especially how do you deal with it when you are told that your life will inevitably change within 10 years! DEAFBLINDNESS! How do you look to the future when you get this message? 20 years two sisters, one older, one younger photographer When she started her study as photographer, she learned that she suffered from Usher Syndrome, an incurable genetic disease that causes deafness and blindness. She was 17 at that moment. Also her youngest sister Roos, at that moment 15, got the same message. At this moment she travels, lives life at the fullest and uses her voice to create awareness for a disease that has been known and identified for over 100 years but not cure has been found (yet). This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx