hello, I am George Hyde from the UK. I was diagnosed with KC aged 12 (I’m now 21), so I have first hand experience of what it is like to be a teenage boy with this disease. Everyone’s case is different, so my experiences may not necessarily relate to yours - sometimes the KC can affect just one eye, other times it can affect both. Here’s my tips for coping when you are or if you are the parent of a teenager.

I started off with RGP (hard, small) contact lenses – these worked fine most of the time. There were the occasional time where the lens would fall out, might slip off – or the worst was not being vigilant enough during the cleaning process: fairly frequently I wouldn’t wash off the disinfectant properly, so when putting in the lenses the following day, I would end up with burning eyes – which was not only bad for the eyes but also meant I couldn’t wear a lens in that eye for good few hours, putting unnecessary restrictions on that day. I’d say cleanliness is the thing to ensure you maintain – from experience, it really is so tempting to want to just take out the lenses and go to bed – rather than spend the few minutes cleaning them properly.

With regards to school and having keratoconus , I would make sure the school knows about it . As I’m sure you have now learned, most people are highly ignorant about the disease, and so having something in writing that explains it, that can be circulated among teachers is invaluable. Sadly I didn’t have access to such a thing when I was at school, so I had to attempt to explain to teachers why I couldn’t see the red/green board pens as well as the black pens, and why, even though it was a nice sunny day, the glare from the board was unbearable and so the blinds needed to be shut in order for me to read it. This is a great guide for schools about KC 

If you have a child with keratoconus, a priority would be asking as many questions as necessary in order to give both you and your child a good knowledge and understanding about the condition. One thing I tend to point out to new members on support groups is not to be scared by the stories you may read: Many, many people may get by with KC and never have any major problems. However, often people  may have difficulties with the disease – it may seem a bit overwhelming to read people talking about transplants etc – everyone’s situation is different and so it is worth listening to what your child’s ophthalmologist has to say about their individual case! 

With regards to managing it all – it can be quite problematic at times, especially aged 14/15. If your child is trialing contact lenses, it may be worth asking his ophthalmologist if they achieve good enough vision to last until the summer holidays – the process of fitting a contact lens can be highly laborious and uncomfortable for the first few weeks – which is really not what you want during school term time and more importantly exams.

With regards to your child’s sporting activities such as cricket or, I might suggest buying them a good pair of polarised sunglasses to wear. I remember that was one of the worst things about the sport. Keratoconus patients more often than not have issues with glare/light sensitivity – imagine trying to catch a ball when you can barely look up because your eyes are so sensitive! Having said that, had my mum tried getting me to wear sunglasses on the sports field while nobody else was wearing them, there is almost no chance I would have done so. Perhaps a cap or something similar may help, if your child is as self-conscious as I was! mind you wrap around Oakleys or similar are pretty cool!

I never had any disasters with my KC and teenage years. There were the odd exceptions. I’ve always been really into music, and regularly performed in concerts/competitions. There was a horrific moment when I walked onto stage to play on a televised stage for BBC Young Musician of the Year and my contact lens slipped off my eye and onto my eye lash – I carried on walking to the music stand, hid behind it and quickly put the lens back in – fortunately it didn’t affect my performance too much!!

Perhaps the thing I hated most about the lenses was the limitations it sometimes put on what one did in the evenings/night time. If you can try to find a way to carry around the lens solutions with you most of the time it shouldn’t be too much of a problem. But there were times where I would forget to take them, find everyone was staying over at a friends house, only to remember I had to get home in order to take the lenses out – having some way to ensure there is a way for you to take them out will be a great help.

As your child gets older, they’ll almost inevitably start clubbing and going to bars. Something to be mindful of is the lighting – I tend to stay clear of clubs as much as possible now: I tend to find my eyes do not adjust that well to sudden changes in light, so having lights suddenly shining in your eyes in a dark room filled with people can be highly intimidating. I’m sure they’ll find a way to get around this as I did when I was younger, sticking with a group of friends is one great solution, using them as a human buffer and following them around to get drinks etc! Having said this, your child may have no problem with lighting, as I said earlier, the disease affects people in different ways.

Once you’ve learned more about the disease and the contact lens process etc. It may be worth inquiring about procedures such as Corneal Cross Linking, and also other types of contact lenses. Whilst RGP lenses are commonly prescribed, and often give good qualities of vision, I found hybrid contact lenses worked much better for me – hybrid lenses are essentially hard contact lenses with a soft skirt around the edge – making them more comfortable and less likely to fall out (as mine did quite often). There’s scleral and Kerasoft too- we do have plenty of choice!

I hope I haven’t overwhelmed you with things to consider, but I did my best to phrase it in a way that was easily readable. Let me know if you have any other questions in the comments.

PS: There are a number of people around my age who were diagnosed in their early teens – your kids are not alone!