UK Keratoconus Self-Help and Support Association

Hello.
I'm 18 years old and I have recently been diagnosed with keratoconus I have been given the contact lens to wear to help with it as well as having to wear glasses a few days a week. I have currently been given no information on Keratoconus so I have no idea what it is or what it means all I know is that its thinning of the cornia which I have been told by my opicitanca after being referred to the hospital, please could somebody give me more information on what is keratoconus, whats causes it and all the information I might need as I have been told nothing just been sent for test and received a diagonsist and been told I will need more test in the future I have also been told I may need laser treatment because of having keratoconus at such a young age and nobody pcking it up for years. I also have a gentic disorder called NF1 which can cause eye cancer can this have any like to my keratoconus? I'd be greatfull for any information please, I am currennt going to have my eyes tested every 3 months because my visons is changing so rapidly which worrys me because I am a trained beautican and training as a hairdresser I really need my eyes to have good vison is there anything at all I can do to help my keratoconus because I really don't want to end up having laser surgery on my eye because the thought of its really scares me.
ThankYou
Gabbie Gregory

Gabbie

Welcome to the forum, and congratulations on having found us.

Keratoconus is a disorder of the eye. Nobody is entirely sure of its cause, but the effect is that the cornea (the little window at the front of the eye) thins and goes out of shape. This causes light to be scattered as it enters the eye and travels towards the eye's interior lens. The person with KC will experience blurred vision or multiple images.

There is no cure for Keratoconus but the most common way of managing the condition is by prescription of glasses or contact lenses.

There are leaflets that you can download on the KC Group's website. I think that the one of most interest to you is an article you can find at
http://www.keratoconus-group.org.uk/whatiskc.html

Every good wish.

18 years old is a good candidate for CXL (Collagen Cross Linking). Which is supposed to help slow down, pause progression of KC.

Your KC will never improve (unless for some miracle), and it usually does gradually get worse as you get older. Its a progressive degenerative disease. Its difficult to spot in the very young, because it can mask itself as myopia with an astigmatism. This is what I was diagnosed with. It wasn't until I was 33 when someone picked up my KC. My vision went from driving/reading computer screens with no vision correction to having to use contact lenses within 3 years. I was gutted to see my vision deteriorate so rapidly.

Unfortunately, there is no magic treatment or cure for KC. Most treatments you might come across are pretty new, and have no long term research results. Also, because KC is unique to each patient, there is no guarantee that any treatment will be successful or not.

I don't want to scare you. Its just a realistic overview of KC.

The most common treatment is contact lenses, or glasses if they give you good vision acuity.

The best idea is to have a good chat with your consultant about available treatments, and how far your KC has progressed.

Hi Gabbie,
Just to add that we have an information booklet about keratoconus which I can send you and will answer more questions for you, plus a DVD of our 2009 conference which covered all the options for the condition in more detail. Just e-mail your postal address to anne@keratoconus-group.org.uk and I'll send them to you.
All the best
Anne

Thank you for all your help its been really helpful

Gabbie,

Just to clarify the situation about Cross Linking.

This is a very important break through in the treatment of keratoconus. Contact lenses only manage it.

Munster is right in that it stops progression and does not cure it (i.e. put you back to the place where you were before your vision started to deteriorate). However, it will improve spectacle vision even if the shape of the cornea is not significantly "better" and several of my patients who even have high prescriptions can now wear glasses and see around 3 years post cross linking.

If you get CXL when you have just been diagnosed and before there is any significant progression, then the likelihood is that you will not get any worse and will see some improvement. Most professionals hope that, in the future, people will routinely have CXL as soon as they are diagnosed with KC.

This is certainly something worth investigating.

Lynn

Hi Gabbie
Please look at the post I made this morning called 'Good News'. My son was diagnosed eight months ago aged 17 years.
I hope my post might give you some encouragement. Cross-linking is certainly worth serious consideration. Not available on the NHS yet though.
Please keep posting or asking for help.