UK Keratoconus Self-Help and Support Association

i've been reading everyones topics for a while and thought i would join and say hi. I have KC for 15 years and has been stable, i get away with wearing glasses at the mo. My son is 13 years old and has KC for a couple of years. Glasses dont work and he has tried hard lenses but couldnt wear them (comfort). The last 8 months it has deteriorated greatly and we were advised to get cross linking done, starting with the left as it is the worst. The procedure couldnt be completed as his cornea wasnt thick enough after the drops (370). As you can imagine we were gutted. I asked whats the next step and was told possible transplant but had to focus on his vision first, he cant read top line on the board at optoms. He is now wearing piggy back lenses and is doing great, really good vision and wears them most of the day. Its been a hard few months but we're getting there

kat xx

Hello kat, and welcome to the forum.

I am sorry that your son is having such a torrid time; and am surprised that they even offered him Crosslinking with a cornea thickness of less than 400.

That said, there is every prospect that his vision will be very good with contact lenses. These days there are several types, styles and materials of lenses for people with keratoconus. I hope that your son will enjoy improved vision with lenses for a long time to come. If the day does arrive when he needs a transplant, then we will answer any questions he may have about that procedure and what to expect.

Every good wish.

Andrew

Kat,

Hello and welcome to the forum!

I am sorry to read about your son. RGP lenses do take some getting used to, but with patience he will find that they really do help! I see very little without aided vision with lenses, so I do understand. I started wearing RGP's at 14 and continued, (I am now 33). I do piggy back now, a soft lens underneath as it started to get painful and sore. But apart from that it is ok.

I know that at his age it is difficult as it is the time to be taking exams and planning a future! He will get there though and I wish him all the best.

Take care, love Claire X x X

thanks guys for the kind words. jordan has an appointment on friday at the hospital so will see how things are and I have a eye test tomorrow, so a busy week for us both