At the time this was not diagnosed as LHON - just 'optic atrophy of unknown origin'. It was not until many years later, when my nephew was also affected, that I learned about LHON. I now know that we have the 11778 LHON mutation, and in fact there is quite a large family tree being built of people related to us who are affected by LHON, mainly in the North East of England.
I spent the summer of 1976 at the Royal National Institute for the Blind rehabilition centre in Torquay. There I learned touch-typing, Braille and how to use a White Cane, but, more importantly, I learned about independence, as it was my first lengthy stretch of living away from home. I went on to start a B.Sc. degree course in Biology at the University of York. Things did not go too well at York. At the end of the first year I passed the exams but dropped out of the course. Maybe I wasn't as ready to face the world as I had hoped when I started it. Luckily I got onto a Computing Science degree course at North Staffordshire Polytechnic, and moved to Stafford in 1977.
In the next few years I learned a lot more about using the sight I still have, and life went better at Stafford. After a four-year course, including
18 months working as a programmer at North West Water in Warrington, I graduated and left with a First Class Honours degree.
Once I got hold of better Low Vision Aids, I stopped using Braille as it is too limiting compared to print. For the last twenty years I have found that high-powered hand lenses and spectacle magnifiers are the best way for me to deal with reading and using computers. I can see large objects as fuzzy shapes, so I don't need a white cane or guide dog to get around most of the time, especially in familiar areas. Although I carried and used a cane for a few years, I found the negative impact that it made was not worth the few times I really needed it. Now I only carry a small folding white cane in my briefcase, which is useful in unfamiliar or badly-lit situations. A pocket telescope or monocular is essential for reading signs, train destination boards and such, especially on the London Underground.
If you've got this far down the page, I hope this has given you a little bit of insight into how LHON has affected me. If you want to know more about how I (and other people) deal with LHON, why not join the LHON Mailing list? There are many people on the list whose lives are affected by LHON, either directly or indirectly.
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