Hi! My name is Taka, and I’m 36 years old from Japan.
I was diagnosed with Retinitis Pigmentosa, a rare eye disease, when I was seven years old. It took me two months to receive a diagnosis, my parents first noticed something was off when I would walk very slowly when it got darker in the evenings, so they took me to an ophthalmologist who referred me to a doctor at Columbia University in New York, where I was diagnosed.
There is no treatment for my disease yet, but luckily there are ways to make activities easier, enabling me to work, read and even ski. For example, my work has helped make things more accessible for me by providing magnifiable reading devices and screen reader applications, and there are even apps on smartphones that will read out text. What is still lacking, however, is communication and understanding of the implications for people with my condition. For example, I always have to explain to people that new systems and workflows take longer for people with impaired vision to adapt to.
With my condition, these are several daily activities that are more difficult for me than for most people. Crossing the road, using public transport, trying to find a certain restaurant or going shopping are all challenging for me.
However, living with my disease has a positive impact on my life by showing me the kindness of humanity. As I walk with a cane, I have strangers come up to me offering to help guide me to where I am going, showing people’s kind character. Skiing is one of my favourite hobbies, alongside cooking and singing, and it is the help of others at the Blind Ski Club that enables me to do this, by skiing alongside me and guiding me along! The many people I have met who have shown me great kindness brings me comfort and joy, and has led me to show gratitude in a way I have never before.
I am very lucky to have many wonderful people around me, especially my wife and family, and living with my progressing condition has taught me how to deal with adversity. I choose to live every day with optimism and positivity instead of negativity or pessimism – I know I cannot change my situation, but I can change the way I think about it!