At the time of vision loss I was working in a sales team for an investment company in London. My life was very busy working hard, socialising with friends and playing various sports. I had just moved back in with my parents so that my girlfriend and I could save to buy our own house.
The signs of vision loss were so subtle that I am only aware when I look back now. I remember getting to the rail station and having to squint to read a sign and just thinking that I had been working too hard. I remember the lights in my office bothering me and I asked our facilities manager to remove a bulb above my head, I didn’t think anything of this at the time. This must have gone on for a few weeks before one morning I got to work and realised that I couldn’t read an email. At this time I decided that I must need glasses so I took a trip to the opticians during my lunch break. They asked me to cover my left eye and read the chart, I was able to read the bottom line, it was only when they asked me to cover my right eye that I realised that I had a big white foggy patch in the middle of my vision. It turned out that I had profound vision loss in one eye and my other eye had been compensating and things were occasionally appearing blurry.
The optician sent me straight to Moorfields eye hospital. They carried out various different tests and concluded that the most likely diagnosis was optic neuritis. Over the next few months I had 3 MRI scans, 2 lumber punctures and about 20 blood tests, all of this time my vision was declining at a devastating rate in both eyes. Eventually my genetic blood tests came back confirming that I had the 11778G LHON mutation. I was devastated; my life as I knew it was over. In the early days I remember feeling very depressed and redundant. I had lost my independence and was suddenly relying on my friends and family to help me with basic daily functions.
In the early days my main aim was to regain my independence as soon as I could. This wasn’t easy as I could no longer drive which was a big barrier to travelling around on my own where I lived. I took things one step at a time and set myself small goals. One week I remember going to the gym on my own and how daunting the prospect of this was, it felt ridiculous but I had to keep telling myself that things were different. I found the LHON Facebook group to be a great support, I was able to speak to people in private who knew exactly what I was going through. This eventually led to meeting up with people and this really helped me to see what can still be achieved with a visual impairment. Eventually I returned to work and have started the process of buying my own house. I have realised that the goalposts have moved but my goals remain the same. I feel that I appreciate everything in life much more and I don’t worry about small things that I can’t influence. I always try to be positive about what I have in life instead of being bitter about what has been taken away.
Now that I have come to terms with what has happened and adjusted to the situation my life isn’t massively different, things are just a bit more challenging. I have remained in the same job and I feel very fortunate for that. I still have the same friends and girlfriend, I am part of a VI football team and am really enjoying that. I still have days when I feel like I am missing out on so much because of my disability but I feel like the more that I embrace what has happened and the more that I do as a visually impaired person the more that it will become a part of who I am.
The first thing I would tell someone recently diagnosed with LHON is that your life isn’t over and you can still fulfil all of your goals and ambitions. Secondly I would say that it is going to be a long road coming to terms with the situation and adjusting to your blindness, give yourself time and take everything one step at a time. Finally I would say that losing your central vision is devastating and life changing but it is not the end of the world. Most people with LHON retain a good amount of peripheral vision which means with a period of adjustment you are able to retain your independence. Life will be different but not necessarily worse.