My story begins in 1972 when I was 25. I was working in a bank in London and was starting to notice that the figures in the ledgers, appeared to be double. I had been wearing glasses for a few years and the optician referred me to Moorfields. I explained that I was getting double vision and after a while I was sent down to the children's department. It was a strange experience at age twenty five being shown Noddy and Big Ears on sticks. After a while the technician said, “you don’t have double vision”. I then explained that the double was not vertical but horizontal. I quote this to demonstrate how difficult it was to get a diagnosis in those days. Further examination revealed Keratoconus. I lasted a while with spectacles but the distortion became too great so I had to start on a very difficult journey with contact lenses.
The Gas Permeable lenses were very uncomfortable and became more difficult to wear. The consultant said that patients found it easier to tolerate lenses after a graft and suggested that if he cut the eye in the same place, like a fake graft, this may ease the discomfort. He did the operation but I can not remember how beneficial it was at the time.
These were the days when people smoked
in offices and I became more and more sensitive to impurities in the air. I would walk out of the office and find it
impossible to keep my eyes open sufficiently to cross the road. Fortunately, my friend Ian would help me
navigate the traffic and get me to the station.
The lenses got increasingly difficult
to wear and I kept knocking them out. I
would be sitting in the passenger seat late on a Saturday night having lost a
lens and with a torch my wife would have to gradually disrobe me till she found
it. She even found one I’d dropped on a
pebble beach.
In the early 80’s I took up
jogging. Without lenses, I went out at
about 6:30am when it was still dark, but because of my poor vision I ran
straight into the back of a paper boy, which frightened the life out of him.
As the decade progressed I became
increasingly sensitive to tree pollen. I
knew that it would start around 15th March and last a month. I became so sensitive to light that I could
not bare to open the curtains in the morning.
I found I needed Ski goggles with closed in sides just to get out of the
house.
A friend recently reminded me of the
time we visited a swimming pool in Jersey while we were working there and how
he had to tell me if there was any one in the water before I could dive in.
With all this going on I don't think I
ever told my bosses that I had a problem doing my work. I didn’t get or expect any special treatment
and in fact kept my problems hidden in case they inhibited my advancement.
Eventually, in 1986 it was suggested
that the time had come for a graft, which I had that year. I found wearing glasses for the grafted eye
and a contact lens on the other much more comfortable. This lasted till 1995 when I had my second
graft.
During those nine years I had been
very accident prone. Always tripping
over kerbs, falling over and generally being clumsy. It was only after the second graft that I
realised that the problem was due to my seeing with only one eye. Sometimes I would leave my glasses off and
only use my contact lens on my right eye, while other times I would leave my
lens out and see through my left eye using glasses.
I am saying all this to illustrate the
point that as Keratoconus patients, we have a variety of problems to
overcome. To the outside world, when we
have a good fit with our lenses, we lead a perfectly normal life. But half hour later when the lenses become
intolerable we could become clinically blind.
I would go form struggling to butter a slice of toast, having to get so
close, getting butter on my nose was a problem, to working normally at my desk
two hours later. Then getting home
removing my lenses and cutting up bits of cardboard to make a pin hole through
which I could watch television. It is
this paradox that is so difficult to explain.
Not long after my second graft I could
get by with spectacles so I was discharged and forgot all about
Keratoconus. I don't have perfect
vision, it has left me with an astigmatism but it is good enough to drive,
although I can't see my golf ball if I hit a good shot.
In 2014 I wondered if technology had
improved enough for me to get laser treatment to improve my vision and asked
for a referral to Moorfields. They said,
“beautiful grafts don't push your luck”.
However, that visit put me in touch
with the Keratoconus Self Help Association (KC Group) and I have had the good
fortune to serve on their committee ever since.
The aim of the Association is what it says on the tin. Its a place where members can share their
experiences and discover they are not alone.
The thing I remember from the 70’s and 80’s was the constant feeling
that I was not getting my message across to the clinicians. I would explain what I could see and the
difficulties I was having with the lenses but I never felt that they understood
what I was experiencing. At the KC Group
we are doing our best to improve communication and understanding from both
sides of the optometer.
I am very fortunate that both my
grafts were done by Prof. Roger Buckley.
He came to give a talk at our conference in 2016 and a video of this can
be found by following this link on our website: http://www.keratoconus-group.org.uk/conference_2016/.
I bumped into him as he left the building and asked. “Did you really cut my old cornea out with a
broken piece of a Blue Gillette razor blade?”
He said yes; “and it was particularly difficult when half way round you
had to do it left handed”.
I retired in 2007 after 44 years in
finance and the message I want to send out is this. Yes, with Keratoconus you will have
difficulties but there is no reason why you should not have a full and active life. At the first meeting of the KC Group I
attended, I met two mothers of teenagers who were desperately worried about
their children's ability to study for exams.
What I could tell them was that during the most difficult years, when I
was struggling with Gas Permiable lenses and working full time supporting a
young family, I still managed to study for my professional exams.
The moral of the story is that whilst
keratconus is an inconvenience, it is not a barrier. Its just one of life's problems that you have
to overcome. Coincidently, in 1984 when
my eye and employment problems were colliding to make a perfect storm, I had a
desk diary with a daily motto. One day
it said “ Life is a sandstone, it either grinds you down or sharpens you up,
depending on the stuff you are made of.
There is a lot going on with research and technology and there is every
reason to be optimistic.
Neil Patelmurray's Story, September 2016
My name is Neil, I'm 20, and I have Keratoconus in both of my eyes. I began to notice that my vision wasn't good while playing sports. In 2008, my opthalmologist diagnosed my right eye with Keratoconus when I was unable to see the largest letter. After one year of vision deterioration, glasses could no longer correct my vision. I spent the next five years trying to find a comforable contact lens. In 2013, my left eye began devleoping Keratoconus, My doctor didn't inform me of clinical trials or research to stop the progression.
In 2015, I saw a corneal specialist, who informed me that I'd just missed the clinical trials for Corneal Cross-Linking (CXL). After doing months of research, I wanted to try CXL. There are two types of procedures; epithelium on and epithelium off. The epithelium on procedure seemed to have shorter recovery times and less risk for infection. However, there were no published research papers with any indiction that it worked! To get answers, I saw an epithelium on surgeon in Chicago, whose response to my inquiries was that you "just have to believe me". As a future scientist, this was not acceptable. I then went to see Dr. Tayfour at the Windsor Laser Eye Institute. He assured me that there are rarely complications with the epithelium off procedure. I scrutinized the research he mentioned and I agreed that this procedure seemed to work.
In late June 2016, I had the epithelium off procedure performed on my right eye. Contrary to my expectations, I experienced no pain and only slight discomfort. After one month, I was able to wear my hard contact lens. I decided to get my left eye done two months later. I was wearing soft contact lens after two weeks. My eyes do feel dry sometimes, especially if I wear my lens for 12+ hours a day but I have helpful eye drops. Because it takes months to see a change in vision, I am optimistically waiting to see the effect of this procedure.
Dan George's Story, September 2015
My name is Dan George, I'm 30 years old and have lived in Southend on Sea for the last 11 years.
I got diagnosed with Keratoconus shortly after moving to
Southend and was referred to specialist.
I was trialled with a number of both hard and soft contact
lenses. The hard ones I found too uncomfortable to wear, although I noticed
that my vision was a little sharper with them.
I've been sticking to my soft lenses since then. The vision
in my right eye is so poor that my current prescribed lenses make very little
improvement to vision, so I’ve been wearing just the one lens in my left eye
for the last 2 years or so.
I was encouraged to have the CXL treatment earlier this year
on my left eye. This is the eye I rely on most and it would make sense to
prevent the condition worsening in this eye.
To be honest I was very worried about having any procedure
like this done on my good eye, I kept thinking about things that might go wrong
during the procedure and impacting the vision I did have.
I kept putting it off for the most part of the year, but during
these last few months I've been noticing headaches, increased stress, and I go
through periods of time when my eyes seem hyper sensitive to light.
I've also noticed the development of a white mass on my
right eye. When it was smaller I was told by a consultant that it was scar
tissue left behind from an ulcer, but I do find its growth worrying.
At this point I am now open to CXL and anything that will
improve my vision.
I would be happy to speak to anyone who has had any
similar experiences.
Anne Klepacz's Story, June 2015
I was diagnosed with keratoconus (KC) back in 1983, when the rigid gas permeable lenses that I was wearing for what I thought was just pretty bad short sight were no longer giving me adequate vision. I was referred to Moorfields Eye Hospital, where I was told I had KC (which I’d never heard of) in both eyes and that it was already very advanced. These days, such a late diagnosis would be unlikely to happen – corneal topography machines which map the cornea and show the irregularities mean that people are usually diagnosed at a much earlier stage. And of course, these days there’s the option of collagen crosslinking (CXL) to stop the condition progressing. But back in the 80s, CXL hadn’t been invented.
Life was hard for the next few years – my KC continued to
progress so I needed a new prescription and fit of contact lenses every few
months. I was lucky in having been in my job for quite a few years by then, so
my bosses realised that I wasn’t having them on and were sympathetic. But that
didn’t make it any easier trying to get through the working day. My lenses were
constantly painful, I had ghosting, glare, multiple images, so making sense of
the world let alone coping with all the reading I had to do was exhausting!
My life was reduced to work – as soon as I got home, the
lenses came out.
I gave up driving – my poor vision made it impossible. So
it’s probably not surprising that I got depressed and isolated, worried about
whether I’d be able to keep my job and keep paying my mortgage, worried about
what the future held. And of course, this was all in pre-internet days, so I
couldn’t find any information about KC and knew no else with the condition.
So when I was offered my first corneal transplant in 1986,
the decision to go ahead was easy – I felt I had nothing to lose. Two years later, I had a transplant in my
other eye. For me, the transplant journey didn’t prove straightforward, with a
few complications along the way including rejection episodes (fortunately reversed
each time with extra steroid drops). But I did manage to keep working full time
and, a few years later, I was finally out of the woods! I had contact lenses
which were comfortable and gave me excellent vision, I had back-up glasses I
could wear on the occasional ‘bad lens’ day, and I got my life back!
It was then that I started to think ‘if only I’d been able
to talk to other people with KC, maybe life would have been a bit easier’. So I
started talking to some of the staff at Moorfields about setting up some sort
of support group, and with their backing, the Keratoconus Group was born.
Initially, it was just a small group of people with KC who met at Moorfields
Eye Hospital. In the 25 years since the first meeting, we’ve become a national
charity (The Keratoconus Self-Help and Support Association) with around 2500
members on our current mailing list and many more who have contacted us over
the years or who now visit our website www.keratoconus-group.org.uk
and join our forum where they can talk to others with KC and finally find
people who understand!
As well as the website, we produce newsletters which are
sent to all our members, arrange members’ meetings in several cities around the
UK, organise a conference for our members every two years, produce various
information booklets and leaflets and generally try to keep our members up to
date with new developments in treatment options and research. So we’ve come a
long way, even though the charity is still run by a management committee who are
all volunteers and who all have KC themselves.
As for me, I finally retired from my ‘day job’ a few years
ago so I’m eternally grateful for my transplants, which enabled me to live a
‘normal’ life. And I now have even more reason to be grateful to those who sign
up to the donor register. After 28 years, the graft in my left eye failed last
summer and 6 months ago, I had a regraft. Hopefully that new cornea will see me
out!
Ashley “Bernie” Winter's Story, May 2015
Keratoconus is potentially a life changing condition, for some with the blurred vision, floaters, endless visits to the ophthalmologist, contact lens fitting, drops, tablets, sore eyes, secondary conditions, dry eyes and the pain of explaining your condition to others this can restrict your life. But for me my life has improved. Although at my stage I am not yet being considered for implants, cross linking or a transplant I have moved my life forwards like I never expected.
Since being diagnosed back in 2010 I have married my gorgeous wife, had 2 beautiful daughters, Skied for the first time thanks to BattleBack and Help For Heroes, consequently joined the Combined Services Disabled Ski Team, Taken up downhill mountain biking, met HM The Queen, formed a charity cycle group raising money for various charities close to my heart, signed up for the great north run 2015 and secured a stable job within the Army (something I never thought could continue).
My Story:
I was initially diagnosed with Keratoconus in 2010. I have attended various ophthalmology appointments every 6 months and contact lens trialling appointments sometimes every 4 weeks.
I have trialled GP lenses, soft lenses, glasses, piggy back lenses and now soclear hybrid lenses. Although the latter is still painful it is bearable but not for long (about and hour). The others dry out especially when driving or cycling to the point where it is dangerous. As the prescription changes so often and vision isn’t good enough glasses are now out of the question.
What Next:
Well I will continue to attend my appointment and trial anything they throw at me with a hope that one day this will get better. I have been helped by a lot of companies and charities so my aim is to pay back via fundraising. 24 hour mountain bike endurance race, Lands End to John O Groats 2016, Blind bungee jump, Wye valley cycle, Great North Run 2015, and I am also looking to do London to Paris in 24hr.
@ash_adventure
Please find me on twitter for information about my charity work and please donate via my justgiving page.
Ashley “Bernie” Winter
Fight the Fight, Fight for Sight!
With thanks to My Wife, Parents and Family, Discover 2 Empower, fitbit UK, BattleBack, Keratoconus GB, Combined Services Disabled Ski Team, Fight for Sight, Blind Veterans and Bright Red.
Chris Reeve’s Story, January 2015
In 2009 I suddenly noticed haziness in my right eye at the
age of 18 (a symptom of Keratoconus). I
saw my opticians who confirmed my vision in my right eye had slightly changed, that
I only needed a contact lens to correct it and my eyes were in a healthy
condition.
My eyesight significantly deteriorated through the years, so
I went back to my opticians who then confirmed that I had symptoms of
Keratoconus. They immediately transferred me to the East Grinstead Eye Clinic
to see an ophthalmologist. I was
diagnosed with Keratoconus in 2014, with the condition mild in my left and
severe in my right eye.
I had been relying on my left eye since the symptoms had
started. They caused me stress, strain, headaches and discomfort, with a major
impact to my driving.
Luckily I had Collagen Cross-Linking treatment on my left
eye in October 2014, which recently became available on the NHS. Unfortunately
my right eye is so severe I’m unable to have this treatment and I’ve been on a
waiting list since October 2014 for a corneal transplant. There is a shortage
of cornea donations in the UK and because of this I don’t know how long I could
be waiting.
My right eye is progressively deteriorating, affecting my life.
It could get to the point where I will no longer be able to drive and could
even lose my job!
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