UK Keratoconus Self-Help and Support Association

Hi

My son has recently been diagnosed with Keracotonus he is 13. We went in thinking it was for a stigmatism but we're told that he had a degenerative disease. I have so many questions. We are waiting for a corneal scan. My main question is will he lose his sight in his eyes and can it affect both eyes or just one.
Thanks one scared mum

He won't lose his sight. Keratoconus can be scary for sure, but when correctly diagnosed soon enough there are things that can be done that should stop progression, namely CXL (cross-linking) which is worth speaking to your consultant about. It's likely, being so young, that he will need this. Hopefully this'll mean that he can live a normal life with contacts or glasses just has many people do.

There's always going to be little annoyances with this condition but try and not be scared for him...

How does he describe his condition at the moment? I wonder if any of the normal signs are showing such as double vision and light glare.

I'm sure the scan will be able to tell you more. Feel free to fire off any specific questions there are people that have had keratoconus for years on here.

Even if the worst comes to the absolute worse, the answer is a corneal graft which although takes a long time to get used to, means people still have their sight.

Hi Cazzy,
Just to add that there's an infomation booklet about KC that I can send you if you e-mail your postal address to anne@keratoconus-group.org.uk And there's a useful leaflet 'Supporting Students with KC' that you can download from the home page of this website www.keratoconus-group.org.uk/sitev3/publications.html
As Olly says, there are various options these days for KC (many more than there were 30 years ago when I was diagnosed). We have members in all sorts of professions, including people who have qualified as doctors despite having KC, so it's a condition that shouldn't stop your son living a normal life.