UK Keratoconus Self-Help and Support Association

Hi,
My son (17) has been wearing glasses for close work since he was 11. He mentioned to me that his glasses arn't helping anymore so he has an opticians appointment yesterday who said he thinks he has Keratoconus. His left ey has gone from -0.25 to +3 in 18 months. The lenses the optician said he now needs didn't actual help at all. He did not issue new glasses but has sent a letter to our GP recomending a referral to the hospital.

Until yesterday I had never heard of this condition and have no idea how it is effecting his sight or what the long term prognosis is for him. Will he still be able to learn to drive with this condition?

He has had allergies all his life, mainly to dust, pollen and furry animals. His passion is fish, reptiles and insects and he has a zoo of many legged creatures in his room. He also loves the great outdoors and love walking in the countryside and woods. Up until now he has taken a dail anithistamine and nasal spray but has refused eye drops. He has started using opticrom yesterday and says he has felt immidiate relief from the itchy eyes. He rubs his eyes a lot.

How best can I support him though this uncertain time and how serious is this condition?

Thank you

Most of us first come across 'keratoconus' when we're diagnosed with it, so you're not alone. It's a young person's condition, usually diagnosed in the teens or early twenties. How much it progresses varies a lot from one person to another - some people only get it mildly, with others it can progress over the years, usually stabilising in the 30s or 40s. The good news is that rigid contact lenses (not the soft ones that most people wear) make a big difference to vision if glasses no longer help. And there's also now a procedure called collagen crosslinking which can stop the progression of keratoconus. When your son gets his hospital appointment, you'll be able to go through all the options for him. In the meantime, if you e-mail me your postal address anne@keratoconus-group.org.uk I can send you our information booklet on keratoconus. And have you found the 'Supporting Students with KC' leaflet that you can download from our home page? www.keratoconus-group.org.uk/sitev3/publications.html You can give this to your son's school or college so that they can offer any help with his studies. (There's a similar leaflet about work for employers). Once your son's vision has been corrected, he'll probably be fine to drive. It's obviously a worrying time for you, but there are people with KC in almost every walk of life, including medics and vets who've successfully got through long uni studies. So unless he has a burning ambition to be a pilot, there shouldn't be much that he can't do in life, despite this diagnosis!
I hope some of that helps.

He's probably quite lucky to get such an early diagnosis. I didn't find out until I was 30.

Try not to rub eyes it's the worst thing for KC. Good luck