Wat als het DONKER en STIL wordt: Usher, Doofblindheid! | Lotte Klaver | TEDxVeghel

At the age of 17, you are told that you suffer from Usher syndrome, a genetic disease. Not only you, but your youngest sister has it too. The Usher bomb drops and suddenly becomes part of your daily life. Every day, the quality of sight and hearing deteriorates. Until silence and darkness set in. What is Usher? What can be done about it, but above all, how do you cope when you are told that your life will inevitably change within 10 years! DEAFBLINDNESS! How do you view the future when you receive this message! The wrong genetic lottery ticket for Lotte. 20 years old, now a graduate photographer, daughter, sister, friend. If you don't know her, she looks like a young adult for whom the world lies at her feet. A beautiful young adult. She sailed through primary and secondary school smoothly. Dear sisters – Roos and Linde – parents, family, many friends. A beautiful life in the bustling city of Amsterdam, where she shares an apartment with her oldest sister Linde and a friend. Life seems good, consisting of cozy dinners, parties, and happy days. Over the past year, she traveled for no less than 8 months and saw beautiful things. But where is that BUT? As you get to know her better, you notice that you have to speak to her directly and that she wears hearing aids. Only the people in her inner circle know that she has had them since she was two years old. She used to be bullied about them sometimes, but actually, everyone thought they were pretty cool. Lotte herself just found them very convenient. You can easily turn them off when it gets too noisy or when she wants to concentrate, such as during an exam. And they are always a great excuse to indicate that you didn't understand or hear something. However, the 'but' doesn't end there. In early 2016, her parents decided to organize a New Year's party. It was a nice idea in itself, were it not that her parents had been divorced for 10 years and had NEVER hosted a New Year's party together. Lotte herself found it a strange sensation, and her sister Roos agreed. On the day of the party, the family was complete, including stepparents, the eldest sister's boyfriend, and Lotte's ex-boyfriend. After all, there has to be a first time for everything. During this "party," her mother suddenly revealed that the reason for "the party" was about Lotte and Roos. The message was "life-changing." Both were told they suffer from Usher Syndrome, a disease that is largely unknown to the general public and therefore did not really sink in with Lotte and Roos at first. But when Lotte saw her father crying, she knew something was seriously wrong. It was explained what it entailed, and then it clicked. It is a disease with certain degrees, but for both Lotte and Roos, the degree is such that they are slowly becoming deaf and blind. During puberty, their sight and hearing deteriorate. Lotte had already indicated that seeing in the dark was difficult, but unfortunately, this will only worsen. It goes without saying that NO ONE wants to start a new year like this. It is an incredibly hard blow for both sisters, their family, and friends, especially because there is no cure and research is still in its infancy. 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