A Personal Perspective

by Christian Bolton-Edenborough

I was diagnosed with BBS1 in October 2014. I am a Masters Law student at Bangor University and I live in Hertfordshire. I go to the Guy’s BBS clinic every year. I know this might sound strange but I was quite thankful of being diagnosed with BBS because it explained a lot of things that happened in my childhood.

I’d always struggled to see long distance. I’d been given various glasses which didn’t help and I could not understand why. I went to university, not knowing why I couldn’t see in the dark. I’ve got a big passion for car racing, so I always wanted to drive but my local optician thought I might have a problem and sent me to Moorfields where I went through lots of tests and one of the consultants thought I might have BBS so sent me to see Professor Beales.

My eyesight is still quite good so I can do a lot of things in daylight, I am only blind in the dark. I am appreciative of the sight I’ve got left and I want to try and make a difference by helping people with BBS who maybe can’t exercise as well or be as mobile. When I went to my first clinic I was told I was obese and needed to lose weight. A real motivation for me was to try and raise funds for BBS UK. Nigel Hills was starting up a Cycle Across Holland event so I thought that sounded good motivation. I come from a family of cyclists so it is something I can do to help raise funds. Through that I managed to hit my target of losing the weight so there was a dual benefit to it. Stefan Crocker and myself are doing a 10 mile run on October 23rd. I’m his guide runner, so that’s going to be interesting. You’ve got me with bad peripheral vision and spatial awareness and you’ve got Stefan with limited central vision… I like to think of us as the Chuckle Brothers of BBS so we’ll see how that goes!

I hope I can make a small difference with Stefan. We’re trying to raise £2,000 for the charity. I’m hoping to give an interview on Radio Wales to try and raise awareness because not much is known about BBS in Wales. I want to try and put information out there about the cilia and research that is going on and how we need the funds to make that research happen.

I want to tell you a funny story from before I was diagnosed with BBS. As a student you go out and have a good time and have a drink. Getting slightly tipsy and being blind in the dark is probably not the best recipe for success! I was the social secretary of my university’s tennis society and heading home late one night, I suddenly realised it was very dark, all the street lights were off and I was in a bit of a pickle! I got to what I thought was my door, turned the key and thought – hang on a minute, why has the landlord changed the lock? I knocked on the door furiously asking for someone to let me in. I suppose I should have been wise to the fact that three Chinese people were standing at the door with spatulas looking at me very aggressively… and since when have we had a door knocker? And then there’s my flatmate standing two doors to the left shouting, “Christian, we’re here.” Unfortunately, I’ve not been able to live that down since! Another story is to do with food and being colour blind, which I am. You’d expect Ketchup sachets to be red, so when I picked up what I thought was a normal Ketchup sachet, it turned out to be vinegar, much to my horror after pouring it all over my food. Due to my pride, I tried not to let any of my friends know because they would have taunted me furiously for this. I ate all my pasta with this soaked vinegar on it and tried to cover up my blushes!

I hope to do more things because I’ve got a real passion for sport. It’s my way of coping with the disability, it makes me feel positive about it. By making a difference it feels like I’m fighting my own syndrome and over the last year I feel like I am able to conquer it. I will continue like that and hope it doesn’t stop me going into a career in law because I aim to become a solicitor.

One frustration has been with work where I have had a few setbacks because of BBS. I’ve had a few jobs where I turned up for work and although I told them I was disabled with eyesight problems, they said, “Well, you’re not registered. You’re going to have to work at the same pace as every fully sighted member in this factory.” Even though I can see in light, I was having to peer at things and unfortunately my supervisor didn’t like that and said I was working too slowly. I was threatened with the sack because I couldn’t see properly. Things like that have been challenges but I’m very fortunate now because I’ve managed to get a pub job with a lot of light above me.

My first ever conference has been lovely and I hope to keep coming. I am always happy to chat to anyone and share any experiences to build up a bank of knowledge so I can then go and present evidence to raise awareness and apply for funding and things like that. I really want to push knowledge of BBS forward.