I am from the North East of England, although I’ve spent most of my working life in London.
I lost my eyesight in 1976, aged 19, and I now know that I have Leber’s Hereditary Optic Neuropathy (LHON).
I wore eyeglasses for short sight (Myopia), and when I went for a routine check-up, I found that I was only seeing properly through one eye. the other eye had a brightly coloured patch in the centre, obscuring my vision.
The Optician (Optometrist) told me to see my family doctor, who arranged for me to go to an eye hospital in Sunderland. he actually sent me to their Accident and Emergency service with a letter rather than waiting for an NHS appointment with an Ophthalmologist.
Within a couple of weeks the patch in the centre of my left eye had grown, and I had an even bigger cloud obscuring the vision in my right eye.
By this time, the standard Visual Acuity test – the well known eye chart, was useless for me, as I could not even wee where the chart was. My vision was down to below 1%.
I had Visual Field tests. At the time these were done by me sitting in a dimly lit room looking (or at least pointing my eyes) at the centre of a large grid on the wall. The tester waved a small light on the end of a stick, and I called out when I could or could not see it. I had what I now know to be the “classic” large loss of central vision (central scotoma) in both eyes.
The Ophthalmologists could not find any obvious signs of a cause and referred me to a Neurologist.
I had a lot of medical tests, looking for various diseases, including Multiple Sclerosis,. As well as lots and lots of blood samples, I had a Lumbar Puncture (Spinal Tap) to test for any infections of the Central Nervous System, and various X-rays looking for tumours or other physcal damage near the Optic Nerve.
As part of taking my medical history I was quizzed about alcohol, tobacco and other recreational drug use.
I was treated with daily injections of steroids for about six weeks, which had no effect.
At the time very little was known about my disorder, and it was simply diagnosed as “Optic Atrophy of unknown cause”.
Everything then switched to rehabilitation, and eventually I attended an assessment and training course run by the RNIB.
On this course I had to re-learn some basic everyday living skills and build up some self confidence again. One of the most useful things I did there was a course in touch-typing.
Even with this help, I was hit hard by the loss of sight, and went through lots of emotional problems for a long time.
I had wanted to do scientific research, and did start a degree course in Biology, but after the first year I dropped out of that course and switched to a course in Computing Science.
Although I’ve kept up a general interest in science, especially medical and biological research, this lead to a career in Computing.
Over ten years later, another member of my family lost his eyesight, and I heard that I actually had a different diagnosis – LHON.
My eyesight loss had followed the classic pattern, one eye first, followed by the other after a few weeks, leaving a large central patch of lost vision (Central Scotoma) . This is not a patch of darkness, but a constantly swirling ande changing field of bright colours, mainly red, yellow and bright green dots. Many people with LHON do say that their central vision loss is a patch of darkness.
Clinicians and researchers at Newcastle University were interested in studying LHON, and one of my distant cousins had started doing a family tree to help them. This got me into Genealogy, and I’ve spent a lot of time (and money) over the years building up the family tree on Ancestry.com.
Newcastle University now has the Wellcome Centre for Mitochondrial Research, and is one of the world centres of excellence on LHON knowledge and research.
Even then LHON was almost unknown to medics, my GP and Ophthalmologist could tell me nothing about LHON. Medical textbooks simply said “A sudden severe loss of central vision in both eyes first described by Theodore Leber”.
As I had taken science A-levels and done a year of a Biology degree, I knew enough to get hold of scientific papers using the few internet-based search engines around in the 1980’s One of the first international uses of the Internet was to allow access to databases of medical research papers, what has now evolved into Medline, Pubmed. Actually reading the research papers meant using a scientific library to get hold of the paper journal.
Once the Internet and World Wide Web became more easily available to the public in the early 1990’s I decided to create a website with everything I know about Leber’s Hereditary Optic Neuropathy, and the LHON Home page was born.
I’ve tried to keep it as up-to-date as possible since then, chasing scientific publications using the resources of the British Library in London and the Internet. I’ve also received invaluable help and advice from the researchers at Newcastle University.
I have enough peripheral vision to move around a familiar area, and use high power magnification to read or work. When I can I use JAWS screen reader, although an awful lot of websites aren’t properly compatible with JAWS or other screen readers even now.