She could see as a child but RP means that she has been going blind since her late teens.
Now she has severe tunnel vision and what she does see is indistinct.
Katy’s wish is to raise as much money as possible to make a real difference to the progress in finding a cure for RP.
RP has a devastating impact on the sight of people throughout the world. RP is disease with no cure and no hope…until now.
Recent advances in research mean that a cure is possible and probable.
Katy's Story
"I was diagnosed 20 years ago with RP. My parents and I were told quite bluntly that I would go blind within the next 5-10 years and that there was no cure likely to be in my lifetime. I was handed a leaflet about the BRPS (British Retinitis Pigmentosa Society) and told that I could come back to Moorfields (the leading eye hospital in London) if I thought it was necessary.
Until this point I never thought there was anything wrong. I just could not see in the dark, which I thought was perfectly normal.
In my teens I went to cookery school and learned to drive - I even drove in the dark under the glare of streetlamps in London, with only a couple of incidents involving central reservations.
At the time I was diagnosed with RP I was working on sailing yachts in the Mediterranean as a cook/crew which I truly loved. At this point in time I was almost able to ignore the prognosis that the Doctors had given me. I did tell a few friends and managed to continue sailing. Nobody questioned my abilities and since my sight was not obviously deteriorating it did not have a devastating effect and my life just carried on as before.
A few years passed and I was on an Atlantic crossing with some friends. Everybody wanted to read a particular book which was doing the rounds and it got stuck with me. Very light-heartedly they joked with me about how long it was taking me to read it, since reading ordinary type was becoming increasingly difficult. When we reached Antigua the friend who I had been on watch with commented that it was lucky that we had had a calm crossing because if it had been rough we would not have been able to use the auto pilot and it would have been an exhausting 4 hour watch having to steer manually and try to read the compass (which I could no longer see).
After this I decided that the time had come for me to finish sailing and I started a small garden nursery business at home. I found it quite isolating/lonely and I became frustrated at losing my independence.
I wanted to keep sailing so I was approached to join the Royal Yachting Association blind sailing team and was part of the team that went to Auckland in 1992, where my team won the gold medal in the partially sighted category.
I also managed to do some fundraising after this and ran up the Telecom Tower in London with a well known boxer, Duke Mackenzie, and the Chairman of the Council of British Shipping. A very mixed group!
I managed to find a job working for a charity fund raising company, but had difficulty adapting to working in an office and using the equipment for the visually impaired which had been supplied via the RNIB. But this was of little use since I had no training and after 6 months I decided to leave.
I then married my long term boyfriend and we set off travelling for 7 months before settling down and starting a family. We visited Moorfields again to speak to the Consultant who assured us that my RP was caused by a recessive gene so our children were not likely to have RP, at least had no more chance of having it than I had.
My sight loss was still gradual and so at times I could still ignore the problem, and consequently not come to terms with it. Interestingly, pregnancy seemed to hasten the rate of deterioration.
We moved to Dubai when Thomas was 18 months old and the bright sunlight and white walled villas made life a bit easier, although going to a new house with low coffee tables was usually a painful experience for my shins.
Two more children quickly followed, and I was a pretty exhausted mother of 3 with a visual impairment and not admitting it. Our second child was born with a congenital heart defect which required a series of major operations at Great Ormond Street over 2-3 years – which at times left me feeling - why me, haven’t I got enough to deal with already.
It all became too much and I howled at anybody who was at all close to me. I did at this point seek help - it did not address the problem of coming to terms with losing one’s sight but it did make me rethink what was important in my life, which was my children and family.
A few years down the line the London Marathon has given me a huge challenge. The reason for doing the marathon is to raise funds for awareness of, and to accelerate research into a cure for RP. The research is coming along leaps and bound and scientists believe that in the next 10 years there will be a cure. Now that there is something positive to aim for I have felt compelled to do something and energised with the thought that there is some hope after so many years.
Training is hard and I never thought that my visual impairment would make it even harder because of the extra stresses and strains on my limbs, which have caused me more injuries than I might have had otherwise.
A recent run that Nicola and I did up and down the Beach Road in Dubai from Mercato to the Burj Al Arab (22km) left me completely exhausted, both physically and mentally, because of all the obstacles we had to avoid, such as curbs, bus stops, benches, bricks, pot holes and continually changing surfaces, and that’s not to mention cars reversing into us. My sight is its usual poor self at the outset of a run but after about 10km it goes completely and I have to concentrate really hard on what Nicola is telling me. I found even just running up and down the Beach Road an amazing thing to look back on – that we actually managed it – but not one I am going to repeat in a hurry since I am now taken Brufen 800 to reduce an inflamed knee from tripping several times!
I still have many basic questions unanswered –
How do you tell someone and help them understand that you just cannot see very well. I am sure that everyone who has visual impairment is given the same retort - where are your glasses, or are you too vain to wear glasses?
And, when is it time to start using a white stick? "
