Laura Steinbusch has a son, 5-year-old Enzo, who has been diagnosed with Leber congenital amaurosis 10, or LCA10. It has made Laura a patient advocate for this disease, and in this interview she explains how the diagnosis has changed her life.
The Netherlands boasts the most prominent patient organization for Usher syndrome. Part of their secret is the passion of the Board. We caught up with president Ivonne Bressers and the Board’s secretary Annouk van Nunen at Annouk’s home in Leiden.
Molly Watt (25) is becoming a household name in the world of accessibility in technology. She is a young, independent entrepreneur, living with Usher syndrome. Accessibility, she says, is “anything, but black and white".
At a glance, it’s hard to tell Maartje - mother of four - has Usher syndrome. Though she manages her life very well, it took her a long time to get to that point. “I have learned to be optimistic, but the somberness is always there."
When watching Cristian, Silvia and Edoardo (age 6) and Beatrice (age 2) they look like the ideal, happy family. When asked, the parents insist they are, in many ways. The fact that Beatrice has Leber congenital amaurosis, doesn't change that.