The hereditary eye condition which I suffer from, is known as a "Cornea Dystrophy" which affects the corneas of both eyes. It is also called Reis-Buckler Dystrophy after the eye specialist that discovered it. My father and uncle both suffered with it, as did my grandfather, who was virtually blind before he died at seventy.  An aspect which has confused the eye specialists is that, somehow, I have inherited two forms of corneal dystrophy at the same time. One is linked to a single family in northern Italy that carry it. They have no idea how, as the defect can only be passed on through the genes and my family have no known relations in Italy. Unfortunately, as all grandparents are now dead, there is no way to trace the source. The condition first became apparent at the age of five when I first started school, I awoke one morning to find my eyes were swollen and very sore and I was unable to open them. These attacks happened frequently right through to my early thirties when they still occurred but not quite so severely. The pain would be so acute sometimes, I would have to lay quite still in a darkened, cold room for a week. Heat or light made it more intense and the only relief came from laying ice cold wet cloths over the eyes. The nerve endings at the front of the eye are the most sensitive in the body and the acute discomfort was caused by small ulcers which would swell and finally burst. They would then heal up but leave tiny scars each time it happened. As the years go by, these scars deteriorate and cloud the vision. Colours become faded and outlines less defined. Corrective spectacles or contact lenses do nothing because, that would be like a placing a magnifying glass in front of a scratched window. The only way to resolve the problem is to replace the "window" or in this case the cornea.. For a medical explanation of corneal dystrophy see: www.optometry.co.uk/files/.pdf Treatment - Corneal grafts are reasonably successful these days and entail cutting a circular piece out of the cornea which is the layer of skin over the front of the eye and replacing it with a donor cornea. The healing process can take as long as a year or more and can be very uncomfortable due to the stitches that are left in the eye for that period of time and daily administration of steroid eye drops is a drag. Unfortunately, the original dystrophy reappears attacking the new cornea so the improved vision only lasts for a short while and getting the exact shape right using microsurgery is a difficult task for the surgeon. There is a new computerised machine that can cut the two corneas exactly the same but the NHS has not bought enough of these machines so there is a very long waiting list. There is also a waiting list for donated corneas due to people's ignorance on how easy it is for them to save TWO persons sight after they have gone... Close your eyes for just 30 seconds and imagine a life without vision Then click the banner below to find out how easy it is for you to give TWO people back their sight when you are gone.... 
DO SOMETHING AMAZING FOR FREE!
INFORMATION FOR PATIENTS ABOUT CORNEAL GRAFTS
|
history of eye surgery August 1984
Underwent first corneal graft eye operation on the right eye in Plymouth, Devon which was unsuccessful. Arrived home after two weeks spent in hospital as at that time they though any movement would reject the donated cornea. The flatmate I had at that time had cleaned me out! She had taken everything, all supplies as well and I was unable to go shopping. It was a devastating moment in my life as I could see nothing and had no one to turn to for six weeks. Luckily my dear friends who ran the Back Street Heroes magazine came to the rescue and took me up to Macclesfield in Cheshire to stay and recover for a while. They did a feature to promote cornea donation to motorcyclists and I was named 'Patch' and put on the front cover of the November 1984 edition.. March 1994
The consultant at Moorfield's hospital decided to try laser surgery which involved burning off deep layers of the cornea of the left eye under a local anaesthetic. Two hours later I was home and in absolute agony. I had been left alone by the person who had driven me to the hospital and was found screaming and writhing on the floor in the hallway of my bungalow in Windsor by a close friend at the time, Nicky. She called out a doctor who had to tranquilise me and she stayed holding my hand for two days until the pain subsided! The vision was not improved one iota. So all that pain was in vain! October 2001
A further corneal graft was performed on the left eye by Simon Horgan at Kingston Royal Eye Unit under a full anaesthetic. It took fifteen months to heal and at one point, eight months after the operation, nearly rejected the new cornea, probably due to the stress caused by difficult personal circumstances at the time. Although the vision was actually worse than before the operation, it did improve once the stitches were removed some 18 months later and then the daily administration of steroid eye drops were no longer necessary which was a huge relief. January 2002
The eye consultant, Simon Horgan, informed me that I needed further surgery. First of all, I had to attend Harley Street, London to have both corneas mapped so that the new corneas can be cut to correct the shape. It had also been discovered that I had cataracts forming in the right eye and this is due to the original corneal graft which was not the most skilful of grafts as, at that time, they were a new concept. I did attend Harley Street for the Corneal Maps but they were unable to obtain them as the scan could not deal with the uneven surface of the corneas. Wed 12th March 2003
Underwent a general anaesthetic and surgery was performed by Simon Horgan on the left eye to correct the misshapen new cornea plus have the cataract removed and a lens implanted in the right eye. So this time I went home with both eyes unusable!November 2003
The left eye has finally recovered and improved and I am hoping to be able to see to drive after waiting 25 years! The right eye has not improved visually at all and I will be undergoing a further corneal graft on this eye in the near future. August 2005
Unfortunately, my vision has deteriorated so I cannot take my driving test after all. Now waiting for an appointment to have the corneal graft operation on right eye plus a new prognosis for the "good" left eye. November 2006
Simon Horgan advised that a corneal graft is now needed on my right eye and adjustment surgery to the left eye. Waiting for the appointment for the operation to take place in January 2007...there is only a one in ten chance of it being a failure but it will eventually deteriorate anyway to the point of virtual blindness so it's worth taking that chance... September 2007
Awaiting the date for a further corneal graft to the right eye. This will take at least 12 months to heal then further surgery will be done to correct the left eye's defects. November 2007
Have an appointment with eye consultant on the 26th to arrange further eye operations on both eyes. Date was booked for Fri 28th December for a corneal graft. December 2007
Hospital rang to cancel the corneal graft operation on the 28th December as they have no donated corneas suitable for the graft. Please click here to donate your corneas - there are many people waiting to see well again and you could help two of them! January 2008
Another appointment was made for February 1st. Also on the cancelation list though in case a cornea comes up earlier... Fri 1st Feb 2008
Underwent the corneal graft to the right eye. Very painful this time for some reason. Was given morphine injections and strong painkillers. Sat 2 Feb 2008
Taking the eye pad off today then begin administering eye drops. Steroids every two hours and antibiotics every fours hours. Still painful so still taking the strong painkillers. Mon 4 Feb 2008
Saw my eye consultant who said it has gone very well and the new cornea is very clear so I am now feeling much happier. Thu 14 Feb 2008
All pain has gone and though there is no longer any discomfort (except the administering of eye drops so often which is a daily grind rather than a discomfort). The vision in the right eye has not changed at all but this is normal and can take up to 12 months to show any marked improvement. Mon 18 Feb 2008
The eye has been doing well and, according to my eye consultant, is well on the road to recovery. The vision is improving all the time. Colours are very vivid but outlines remain blurred. Anti-biotic drops are no longer necessary and steroid eye drops have been reduced to 5 times a day which is a great relief. I am not allowed to swim for the next six weeks until I have seen him again at the next appointment on March 31st. I can now read very large lettering although there is still blurred outlines but this is an amazing improvement on not being able to see a persons face from just two feet away! Mon 31 Mar 2008
Third post op consultation. Cornea is very clear and eye pressure normal though vision is not improved as yet. Steroid eye drops must continue to be administered four times a day until the next consultation due in 3 months time. Sat 14th June 2008
Had to attend Kingston Hospital as the steroid eye drops have caused very painful abscesses in my throat and an oral fungal infection! On penicillin tablets and Dystan medicine to try and clear it up. They reduce the number of times I have to administer the eye drops to three a day but stated I cannot stop the drops or the cornea will be rejected!
Some friendly suggestions for corneal graft patients aftercare... I have now undergone three corneal grafts, one cataracts and laser surgery on both eyes so thought I should share with you my tips for getting through the initial post op period. Stay relaxed. Any stress makes it all the more painful. Keep up with the eye drops religiously especially for the first six weeks. Wash your hands, bedding and towels regularly to avoid infection which can be the main cause of a rejection. To clean the eye I have a good routine in the mornings... Firstly, I boil the kettle for tea and wash my hands. Then I place a cotton pad (make sure it is the pad and not just cotton wool balls) in a small clean bowl with one teaspoon of salt and fill it with boiling water. You could purchase sterile eye wipes but this way is cheaper and works just as well. Then after drinking my tea and answering emails, I use a hand gel antiseptic called 'Pure Klenz' on my hands (available from Boots and other chemists) then squeeze out the cotton pad and very gently wipe around the eye. Then I administer the antibiotic drop. Then after a second cup of tea I administer the steroid drop. (Waiting allows penetration of the first drop and strops it being washed out by the second one) As I was using preservative free drops (I'm allergic to the preservative containing one) the small use once capsules for both antibiotic and steroid are so similar it was difficult to work out which was which. Kept in the fridge they can be used for 24 hours so I used two small plastic glove containers which comes with L'Oreal hair dye. They were the perfect size and I marked one with a big S for steroids. Also very handy to take the drops with you when you go out. If you know a lady who dyes her hair ask her to save you two. Otherwise I can post two to you. Email me Of course you may find you can use the normal bottles of drops which have preservative so won't need this suggestion. They irritated my eye quite badly last time. Wear big sunglasses (fashionable now!) to protect the eye at all times when out. Stops dust as well as the bright lights which you will be sensitive to. I still am not allowed to swim for another six weeks but bending and lifting is fine. Wear a plastic eye shield taped with medical tape (available from chemists) over the eye at night. They say it is no longer that necessary but to my mind you can easily rub or poke the eye at night in your sleep. It's worth that extra protection for two/three weeks until the swelling around the eye has gone down especially if you have a restless sleeping partner!
Close your eyes for just 30 seconds and imagine a life without vision... Then click the banner below to find out how easy it is for you to give TWO people back their sight when you are gone.
DO SOMETHING AMAZING FOR FREE!
A huge big thank you from Nat! My deepest gratitude goes to my eye consultant, Simon Horgan,
and huge thanks to everyone that telephoned & sent emails & texts
full of good wishes and support during my last eye operation in 2008. 'Seeing is Believing'
© 1994To see beyond the clouds of fog before these eyes of mine
To see the beauty of this earth where jewels of nature shine
Behold the sparkling seas and the shining stars above
The details on the faces of the people that I love
To peer beyond the blur is all I long to do
Surely, not a selfish thing to want to see from here to you?
To see a dancing snowflake or a tiny drop of rain
To watch the birds migrating without the slightest strain Seeing is believing is what they always say
But people do not realise when you cannot find your way
They think you're drunk or doing drugs, you just look like a fool
When you cannot read the signpost or understand the rule
The panic and frustration is something I must bear
So do not think unkindly when I turn to you and stare
I'm only trying to focus on expressions from your being
and to see if what you saw is the same as what I'm seeing
One day I hope I'll see your world exactly as you do
My eyes will not deceive me and I'll look at life anew.... |
He is one of the many dedicated medical professionals that truly deserve a knighthood!LINKS TO VARIOUS MEDICAL EYE RELATED WEBSITES | The Human Eye
| Biological, illustrated page about the eye. | www.lasiksurgery.com
| Serving Dallas, Fort Worth and all of Texas since 1983, Kleiman Evangelista Eye Center, one of the first to perform laser eye surgery in the Dallas/Fort Worth metroplex, now offers Blade Free HD IntraLASIK (all-laser LASIK) surgery, one of the safest, most trusted procedures available today. We implant restor lens, rezoom lens and performing various lasik eye surgery. | www.lions-csfii.org
| The Lions International Charity will not allow “nothing to be done.” True to their commitment to be “knights of the blind,” Lions have launched Campaign SightFirst II to prevent this tragedy. CSFII has set out to raise at least US$150 million to continue and expand the extraordinary work of SightFirst, Lions worldwide program to combat preventable blindness. | www.qvh.nhs.uk
| The Queen Victoria Hospital - East Grinstead | www.kingstonhospital.nhs.uk 
| Royal Eye Unit, Kingston Hospital, Surrey | www.moorfields.org.uk | Opened in 1805, Moorfields Eye Hospital, London, England is one of the world's leading centres for eye health | www.rnib.org.uk | Link to the Royal National Institute for the Blind | www.eyesite.org | Information for the public and healthcare professionals
on disorders of the 'front' of the eye and their treatment, including how to resolve 'dry eyes' by cleaning the tears ducts properly provided by Simon G. Levy MD MRCP FRCS FRCOphth a top Consultant Ophthalmologist | www.eyeuk.com | EyeUK is an extensive resource of links to and reviews of UK WWW sites related to the eye, vision and ophthalmology | www.centreforsight.com | World class expertise in eyes including laser & corneal care | www.iiiicare.com | Website of Simon Horgan FRCS FRCOphth Consultant Ophthalmologist. (Responsible for restoring vision through a corneal graft in one eye for me. If it were not for him this site would not exist!))
| www.uktransplant.org.uk | Close your eyes for one moment and imagine what it would be like if you could never open them again....scarey? Yes it is and you have the power in your hands to stop this nightmare for two other people at no cost to yourself. Visit this website or Tel: 0845 60 60 400 | Information about the Corneal Graft Operation | A corneal graft is a transplant operation, involving removal of the central part of the cornea (the clear front window of the eye) and its replacement with a cornea from a donor. | Latest advancements in technology of corneal grafts | British scientists are hoping to become the first in the world to create an artificial cornea which could save millions from blindness. |
Laser treatment can work very successfully for visionary defects other than the corneal dystrophy which I and my family suffer from 
Find out more by clicking link below: 
| 
|
Page last updated: 17 June, 2008 11:09
| 