UK Keratoconus Self-Help and Support Association

My 14 year old son has been diagnosed and i am confused about all the info that i have been bombarded with the deterioration in his sight has happened rapidly over the last 9 months he wore glasses as a young boy but when he reached tthe age of 8 he didnt need them anymore. we went back to the optician earlier this year as he had frequent headaches and i noticed he had started to squint is this common to anyone . i have read that some research has linked allergies and asthma sufferers is this also common with anyone ? we are waiting for an eye referral to the local hospital at the mo he is reluctant to wear his glassess i was wondering if the lack of glasses wearing would make the sight deteiorate faster ?

Hello Tracet and welcome to the forum,
Keratoconus often seems to appear around the time of puberty, so it's common for it to be diagnosed in the teens. And usually one eye is more affected than the other, so making sense of slightly different images from the two eyes can often lead to headaches and squinting. People with KC do often have the allergies you mention, but there are also lots of us who don't have any allergies. Glasses often don't help very much because they often can't correct the irregular astigmatism that's a feature of KC. So your son may be reluctant to wear his glasses because they don't improve his vision very much. Progression in KC is very variable - it can sometimes have a 'spurt' and then slow down. Whether your son wears his glasses or not won't have any effect on that, so I'd just leave him to do what's comfortable for him. The hospital may well suggest rigid contact lenses for him instead - they usually do improve the vision a lot because they correct the astigmatism much better.
Is the deterioration in his vision affecting his school work? If so, there's a leaflet you can download from the home page of this site 'Supporting Students with KC' which you can give to his teachers
www.keratoconus-group.org.uk/sitev3/publications.html
It's always scary to get a diagnosis of a condition that no-one has ever heard of, but options for keratoconus are improving all the time with lots of different contact lenses to choose from. And if KC does carry on progressing, there's the possibility of collagen cross-linking (CXL) to halt the progression (though there aren't many hospitals that offer it on the NHS at the moment).
I know you say you've been bombarded with information, but if you'd like our information booklet on the condition and the DVD of our 2009 conference which covered all the current options for KC, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll put them in the post to you.
I hope you'll get the hospital appt through soon and that will help to put your mind at rest.
Anne

Your story is unfortunately quite common. 1 in 2000 people suffer from Keratoconus, albeit with different levels of severity.

Perhaps your son is reluctant to wear his spectacles because they can not correct the irregularities that exist in the cornea of keratoconic patients.

There is a need to create a regular surface to the front surface of the eyes. Therefore a rigid contact lens provides this surface albeit at the cost of eye comfort. Regular soft contact lenses mask few of the irregularities. Custom lenses such as the Kerasoft range of lenses offer comfort and helps mask some of the distortions. Many patients find this improved comfort and longer wearability better than the crisp but uncomfortable vision that rigid lenses offer. However it is down to the individual needs and degree of keratoconus that dictates the best options.

Contact lenses alone in KC is treating the symptoms not the cause. Simply bandaging and masking the progressive nature of KC. It makes no sense in allowing the condition to deteriorate when there is a proven and effective way of halting the progress of this degenerative condition.
The Gold Standard is to first treat the cause of the condition and then visually rehabilitate the eyes with contact lenses. Treating the disease process with Cross Linking, will often make contact lens wear more comfortable and improve visual acuity. More importantly retain quality of vision for the future.

What tends to happen in the UK is to keep patients in Contact Lenses as long as possible, with the often inevitable progression of the cone and ensuing intolerance to CLs with the normal plight of sore eyes, poor vision and frustration. Contact Lenses can no longer be seen as the only way of caring for KC patients and in many cases early intervention can arrest the condition in its’ mildest form.

Whilst the NHS has been slow to grasp treatments such as Corneal Cross Linking, there are number of private clinics that offer a more pre-active approach to treating children. Some clinics have the authority to treat children as young as 14 years with corneal cross linking.

My personal/clinical experience with patients undertaking Cross Linking over the last 5 years supports the scientific literature that Cross linking halts the progression in KC and in some cases reverses some of the losses over the period of months and years. Most world leading specialist would consider that, 12 years following the first Cross Linking Treatment, this is not experimental and that it is an established procedure. Indeed this is the case in many parts of the world. However in the UK, for what ever reason, the NHS is slow in taking on Cross Linking.

There is a wealth of published papers to support the efficacy of Corneal Cross Linking. It is vital that clinicians and patients make themselves aware of the facts and wake up to this treatment strategy.

You might consider all your options both private and NHS.

Nick Dash

Hi Tracet,

Take a deep breath!!

Out of all this information coming at you, I would just like to explain the glasses issue a little more, as this is what you were concentrating on in your post.

Keratoconus is a condition that occurs when, for many reasons, the cornea becomes both thin and soft - that is, it is structurally weak. The result of this is a cornea that can change shape quite quickly and can result in glasses prescriptions that have a lot more power, for example, horizontally than vertically in the lens (this is called astigmatism). Added to this, one eye is often very different to the other.

Now, we actually "see" with our brains, not the eyes.... they are just the messengers if you like. A change in glasses prescription cause a change in magnification of the image reaching the brain, which then changes the way we see the world. This takes some getting used to, as anyone who has had a new pair of glasses will agree with!

In keratoconus, these changes are often so quick and significant that the brain simply can't cope with the visual effects. It is why many keratoconics simply abandon even trying to wear glasses. As keratoconus affects the cornea physically, as in strength of corneal fibres, not wearing glasses has no affect on progression.

One of the other reasons contact lenses "work" for KC is the fact that ANY contact lens on the front of the eye eliminates the magnification effect that glasses give. This is an optical effect due to the distance between the front of the eye and the back of the glasses lens. Contact lenses effectively rest on the front of the eye, so there is no real magnification. Thus the world looks normal again and the two eyes can work effectively together.

So don't worry about him not wearing glasses but do ask your optician how much he can see without them and if this is likely to affect school work. If so, ask if the optician can give you a report to give to the school, so they can understand his situation. Thus, any vision problems can be managed while waiting for the hospital appointment. It is also important that school understands that he is not refusing to wear glasses due to vanity - it is a fundamental tolerance issue.

Lynn