My name is Katie, I am 21 years old and I have a rare genetic condition called Williams Syndrome and a learning difficulty. It has affected my life on a daily basis, since I was diagnosed at two years old.
One of my main issues with having the syndrome is the Hyperacusis, which means my ears have severe sensitivity to certain pitches of noise, such as cheering and clapping. It’s like a bomb going off, exploding in my ears that makes me jump. When the sound hits me I find it hard not to get very upset and sometimes it makes me lash out.
The Hyperacusis means I have not been to a cinema for many years. The sound is deafening and makes me very agitated and it is not too long before I become very upset. It’s a constant struggle, like a battle. It’s so frustrating. But there are things my friends can change to make sure I don’t get upset when I am out – like doing jazz hands instead of clapping.
I want to be like everyone else. I really want to have a life similar to my friends and be able to go to the cinema but I know with my condition I face many challenges. As well as Hyperacusis I also have anxiety, which leads me to not like changes being made to a planned day or changes to a timetable, so usually I have to get a clear version of plans so I don’t get anxious.
It is absolutely mind blowing the support I get and this is one of the reasons why I have succeeded!
I am so grateful to my family and friends and supporters because all of them have helped in one way or another to shape the person I have become today.
My mum and dad have always come with me to my hospital appointments, they leave me encouraging notes and know the techniques to calm me down. My brother always includes me and plays games with me and he has even fundraised for the Williams Syndrome Foundation.
My family have so much faith in me and this is the reason why I stay so positive. I really don’t know what I would do without them.
Currently, I am doing work experience with Mencap's Campaign and Activism team for 10 weeks. I have really settled into my team and feel like part of the Mencap family. My manager Ciara also has a learning disability and she has been really great.
Ciara and I are working on the Hear My Voice campaign, which supports people with special needs and disabilities to tell their future MP what matters to them. I have told my local candidates how classroom support is vital at school, I found it so valuable.
I would tell other people with my condition to be happy, to keep positive even at the hardest times, having Williams Syndrome is not the end of the world and there is always a light at the end of a dark tunnel.