UK Keratoconus Self-Help and Support Association

I read a lot of topics on the forum and I can understand the frustration of all you KC sufferers out there. As an individual who works for a contact lens manufacturer in a sales capacity I have been fortunate enough to travel all over the world assisting expert contact lens fitters in semianrs and workshops to optometrists and ophthlmologists. You wouldn't believe the number of KC patients in places like the Middle East and India.
Trying to find a solution for all these KC sufferers is not easy. No two KC patients or eyes are alike. By definition every eye is completely irregular. It's not like trying on a pair of shoes for size! Yes, there are plenty of very good contact lens designs out there, RGP, soft and hybrid lenses can all work very well, but you need to find an optometrist with the experience to know when to use a particular design.
Because KC is relatively rare, your average optometrist simply dosen't see enough patients to build up that experience and knowledge. It's not their fault, it's just a fact! I've seen plenty of very good optometrists, but like everything in life, I've seen some pretty poor ones too. Too often I see KC fittings where the optometrist has done a reasonable job, but with a bit more care and patience could still have improved the fit of the lenses and ultimately that impacts on the patient causing poor vision and comfort or both. I know things can be done better because I've seen the most difficult and irreguar KC cornea fitted successfully with a little more time and patience and having the right choice of lenses available.
What I'm saying is don't blame the lenses (I would do being a manufacturer), but make every effort you can to find a good experienced optometrist who knows what they are doing, because it can make all the difference. I only wish more optometrists would look at KC in a different light. Mention KC to most and they shy away with trepidation, only because they lack the confidence or see you as a 'problem' case (no offence intended). We continue to try and educate and train as do most contact lens manufacturers. We understand the problems you face daily in your lives and we continue to work to find better solutions for you.

Graham,

I wish it was that simple. But thank you for acknowledging our problem and striving to find a better solution. We do need it!

I am seeing an experienced hospital optometrist but my right eye has been undergoing a refit for over two years. I seem to get comfort or vision.

It's difficult to read all the manufacturers's web pages proclaiming how fantastic their lenses are. If only I could have one of those! And then I remember that I've tried dozens of different KC lenses over the last twenty odd years.

And I agree that an experienced optometrist can make the difference. I recently spoke to a High Street optometrist, who did fit KC, but she heard my history she reassured me that I was better off at the hospital.

Just off for my appointment. I wonder what today will bring!

Lia

Graham Avery wrote:I only wish more optometrists would look at KC in a different light. Mention KC to most and they shy away with trepidation, only because they lack the confidence or see you as a 'problem' case (no offence intended).

I must be one of the lucky ones, as I am fitted at a independant high street opticians for my KC contact lenses (referred initially from NHS clinic) and for obvious reasons stay with them for my general check ups etc. The staff there regularly ask if someone else can look at my eyes, and just this week took some pics of my intacs as they had only seen them in textbooks not in real life.

Hi Graham

You're quite right in saying that manufacturers are constantly striving to develop new innovative products for patients with irregular corneas including KC. As a result, there's a vast range of lenses on the market from rigid, soft, hybrid, semi-scleral, etc. The biggest problem currently facing hospital optometrists in UK probably is the funding crisis in NHS which is making it more difficult to justify using the more expensive products. I just hope the situation improves after the proposed "reforms", but, quite honestly, I am not overly optimistic. Sadly, it might mean that patients might have to look at the private sector if they want the latest products.

There are, as you know, also issues of waiting lists, and the more innovative products often being more time-consuming. Hence, a lot of practitioners stick to the good old (or the bad old!) rigid corneal lenses, and shy away from experimenting with the new options available. When fitting KC patients one needs to take utmost care not to put any undue pressure on their fragile corneas, and it is often a balancing act when you need to get good vision, comfortable wear, and no damage to the cornea. A lens with "textbook fit" isnt much use if patient cant tolerate it, and conversely, a flat fitting corneal lens would give good vision, and may be comfortable, but, it wont necessarily be good for long term health of the cornea.

We do need more practitioners to take an interest and have passion for dealing with complex fittings. However, most graduates have very little exposure to anything but disposable soft lenses, and most high street chains only fit soft lenses. This leaves the hospital optometrists and independents to tackle the more challenging cases and there are many out there who enjoy the challenge. As you say, patients need to do their homework and find the right person in their locality.