My Visual Impairment and why I’m so lucky!
It was November 2002, when i first noticed my eyesight shudderingly getting worse. I was doing final year of my degree, and I was in the library, writing an essay, when a course mate asked me why i was so close to the computer screen and said i need to go to optician. That night when i tried to plat Pro Evolution football on the PS2 all the players were blurry, so i decided i best go to see someone ASAP.
The next day i went to the optician, who seemed puzzled and suggested i had best go to the doctors to have further tests. So off I went to make an appointment with the doctor, who shone a light in my eye and asked me a few questions and then quickly referred me to the Eye Clinic at the Hallamshire Hospital in Sheffield.
A week later i was at the eye clinic I was having my first visit to the Optometrist. After a few routine tests, that did not show any obvious prognosis, it was then time to be used as a pin cushion for a series of blood tests. Then came the scary part; as my vision detreated so quickly, the doctor wanted to check the possibility that it could be a brain tumor putting pressure on my optic nerves, so i was booked in for an MRI.
A few days later, i was back at the hospital to be told that the blood tests had ruled out diabetes and any other possible reasons that could have explained the sight loss, so i was injected with blue dye and put in the MRI machine. Not only was this a scary experience to go through on my own, but for the next few days my pee was blue!
A week or so later, the day before i was leaving University for the Winter break, I was back at the hospital to be given the results from the MRI. It was such a relief that this was not the cause of my vision loss, but at the same time, I was left with anxiety still not knowing what the diagnosis was. That led for a stressful Christmas, but after some dee esoul searching, i came to the conclusion that anything is better than a brain tumor and the only way to cope with the probable lifetime iof visual impairment, was with positive mental attitude.
So when i returned to Univeristy, i went straight to the lecturer i respected the most and let him know ehn the situation, was, because until niow, i had kept it to myself and struggled through my first semester exams. He was great and immediately referred me to the disabled support centre, who saw me straight away. I cannot praise the University enough from that moment on, as they supported me in ever way possible, in terms of providing computer software and extra time in exams which enabled me to complete my degree.
Fast forward to April, I had, had countless visits to the hospital, no end of tests, I had finished all my coursework, and was almost done with my exams, when I was finally told my diagnosis. I had a rare condition, known as Leber’s Hereditary Optic Neuropathy (LHON). It was thatb rare that the Optometrist, who looked like he was in sixties, had never diagnosed someone wioth it before.! This provided with a sense of relief and then the turmoil, of what next, becuase throughout all this time of not knowing, i had buried the idea of applying for jobs or considering the next stage in my career
My left eye
I have always strived to have a positive attitude towards my disability and I consider myself to be very lucky under circumstances. As you can see from the visuals of my eyes, my left eye has no prereferral vision, but has enough central vision to be able to read large text from close up. My right eye is a lot more blurry, but does have some proriferal vision so they sort of balance each other out, with has abled me to lead a normal life and do what I love, which is teaching people to cook and be engaged with food. The only thing that my LHON has stopped me doing us driving, but at least I never have to be a designated driver.
I know that most LHON sufferers are not as lucky as me and have a lot more limitations with their sight, but I think we would all agree that. Improvements with technology have made ourloves much easier to manage. As it is a condition of the optic nevers, glasses cannot help, but computers, phones and tablets certainly do. When I was first learning to cope with my deteriated sight, I carried round magnifying glasses and a monocular to see bus numbers, but now I just whip out my phone. My sight was slowly deteriating, but it is so slow that I do not notice it.
5 years ago I decided to undergo stem cell treatment and to my knowledge I was the first LHON patient. Although I did not see any imorovement, I have not felt that it has got worse since so hopefully it may have stopped any further loss in vision.
I just hope that my positive attitude towards my condition can be of some inspiration to others out there and although it is a somewhat hidden disability, I always happy to answer any questions that people may have.
