UK Keratoconus Self-Help and Support Association

Hello, our 19-year-old son Samuel is severely autistic and was diagnosed with keratoconus last September. Samuel had a check up appointment this week and much to our horror his left eye has deteriorated significantly, so much so they believe he can hardly see out of it.

Samuel is non-verbal and cannot tell us if he can see you're not. His right eye is also affected but not as bad fortunately. I must admit I was shocked at the sudden deterioration in his way and I'm wondering if he should have had more regular checkups. The appointment we had on Monday was a very rushed and the consultant told us that it was unlikely Samuel would take to a corneal transplant. My question is I'm wondering if there is a specialist eye consultant that deals with people with autism or special needs within the NHS or even Private. I'd be grateful if anybody knows of such a consultant or perhaps a specialist hospital/unit that deals with adults with such needs.

Many thanks

Mark Crofts

Hello Mark and welcome to the forum
We do have one or two other members with autistic children who might be able to help though I don't know how regularly they look at the forum. I do know that a corneal surgeon in Swansea carried out collagen crosslinking for someone with Down's Syndrome a year or two ago (crosslinking is designed to stop the progress of KC though whether it would be possible for your son would depend on the thickness of his cornea). If you e-mail me
anne@keratoconus-group.org.uk I'll give you more information.
Anne

Mark

Welcome to the forum. I am sorry to hear about your son.

I do not know about specialist ophthalmologists, but I do know that there are a number of people with varying degrees of disability who suffer from keratoconus, and it may be that there is someone else whom you might consult.

I am just a bit puzzled that you should be thinking about surgery when your son is still only 19. There are other, non surgical strategies for coping with keratoconus. That said, you are entitled to ask for a referral to a different ophthalmologist and even a different hospital. Larger centres usually have more specialist staff.

Every good wish

Andrew