James Ferguson

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James Ferguson


Length of time you have lived with LHON

8 years

I had made it to the age of 22 with a Sociology degree and two real passions; Manchester United and a desire to travel the world.  To achieve the latter I’d completed a course to teach English as a foreign language. Armed with this, a passport and a heavy dose of serendipity I’d flown out to South America where I’d spent seven months travelling and teaching.

My vision was first affected after a drunken night out. I had incurred a bang on the head (no recollection of how this occurred) which left me with blurred vision in my left eye. The doctors told me it would naturally recover so I gladly accepted this and soon afterwards boarded my flight for Brazil. Six months later and the vision in my right eye started deteriorating. I spent about six weeks seeing an eye doctor in Chilie. None the wiser I returned to Manchester. Showed the specialist all my test results and I had a preliminary diagnosis. It was later confirmed by the blood test results that I had LHON. Being told there was no cure my world felt like it had ended. I vividly remembered not being able to see any hope. How could I ever work, live independently, play or watch football never mind travel independently?

I am fortunate to have a strong network of friends and family who were all very supportive, but I knew that it was my life and it was down to me to rebuild it.  Through determination I put myself through endless difficult experiences as I slowly built my confidence back up. I sought out people with LHON as despite best intentions those not affected cannot fully understand and truly empathetic conversations were very powerful. Practically I use Supernova (assistive technology) on my computer that allows me to access what everyone else can. The two other essential gadgets are software that allows my phone to talk and an electronic magnifier.

As for the positive impact it may have had on my life. It’s funny as my parents believe that LHON was ‘the making of me!’ whether I would have grown into the person I am today anyway we will never know?!

Everything that I thought wasn’t possible has been and more. I currently work for the NHS as a CBT (Cognitive Behavioural Therapy) therapist, living independently in Reading. I exercise regularly and ran both the Reading and Berlin half marathons this year. Although my passion for Manchester United has diminished it still exists and I either listen to the radio or sit with my face about an inch from a very large TV. I have done some amazing travelling from Guatemala to walking El Camino de Santiago Compostela (a 500 mile pilgrimage across Spain). The most adventurous trip was two weeks hiking and camping in the French Alps last summer, just me and the mountains.

The reality is that your life will be infinitely harder from this point on as the world is designed for fully sighted people. However you can learn how to adjust, adapt and thereby live the life you want. My advice would be not to let anyone else, or your own anxieties dictate what you are capable of but in your own time learn through experience.