15 year old son newly diagnosed

[CarolFarish]

Hello my name is Carol and on Friday my son James who is 15 was diagnosed as having Keratoconus in his right eye and has also minor changes in his left after a routine visit to the Optician for an eye test. It has come as a big shock to us all but especially to Jim as he thought his vision to be fine, we only went to the Optician because his step brother thought he needed reading glasses and Jim just tagged along, a fortunate decision it would now seem. He has been prescribed glasses which he has been told he needs to wear all the time and has a referral to see an eye specialist. I have searched the internet and found this forum which has been very helpful with information about the condition but we are not sure where we need to go from here.

I have informed his school as he is in his final year studying for his GCSE's and hoping to go to College next year or 6th Form, we are unsure as to the impact a change in vision will have on that and what if any help he may need. He plays a lot of sport but it seems contact lenses will help him to keep that up and I am assuming contact sports are not a problem, he plays both rugby and is a football goalkeeper and has taken blows to the face before including the eye, can this cause problems??

He is worried about the progression of the condition and is extremely confused. Is being diagnosed young a good thing or will the condition cause more problems as it has started when young??

Thank you in advance for any information and advice received

[Andrew MacLean]

Welcome to the forum.

The first and best advice to give your son is DON'T PANIC

The diagnosis of an eye condition of which you have never heard and which nobody can spell is sure to be a shock, but once he is over the shock he will realize that there are people all over the world living with the same diagnosis. For most people with keratoconus, the condition never progressed beyond a point where it can be corrected and managed quite comfortably with glasses and / or contact lenses. For a minority there may be a need for surgery and for a minority of them there may be a need, eventually, for the transplant of tissue into their eyes.

There ought to be a health warning attached to our forum: people usually pose here because they are experiencing problems: this does not mean that their problems are typical of the condition. Indeed, with keratoconus, it is hard to know what we would say is typical of the condition. One of the optometrists who regularly posts here has been known to say that keratoconus is a 'bespoke' condition. We each exhibit our own variation of the condition and its development.

Every good wish

Andrew

[Anne Klepacz]

Hello Carol,
Just wanted to add that if you'd like our information leaflet about keratoconus and the DVD of our 2009 conference which covered all the options in more detail, just e-mail your postal address to
anne@keratoconus-group.org.uk and I'll post them to you.
All the best
Anne

[Ian Anderson]

As said previously Dont Panic

I was slightly older than your son when diagnosed (17 / 18) just before my first job when I had to get a medical. Doctor said go see the optician as you may need glasses!

Anyway we all paniced as back then we paniced (I/m now 52) so no internet and no advice on what should be done. Oh and I was also in Zimbabwe!
So lots of opticians, opthalmologists etc and each says something different and panic sets in more and more

Eventually I got on with life
One day when on holiday I saw 2 opthalmologicts / Opthalmic surgeons the same day (both paid privately) - one said need hard lenses and an operation the other said naah lenses will never work and you just need correctly prescribed glasses. He did this by using what he referered to back then as "laser eye mapping". Basically you look into a machine which fires light into your eye and takes the measurement of what needs to be done with the lens and generated a perfect prescription. After that he sat me at the normal optician desk - fitted the prescription the machine said and hey presto I could see bettter than I had for ages. He adjusted by a couple of degrees the plane of main astigmatism but I still wear that prescription 20 odd years on - ok tweaked to allow for normal aging!

So do not dispair, if one person says something you are not happy with - move on and get a second opinion - it can take time but you will get there and possibly not need anything more than a pair of specs!

Ian

[Rose]

Hi
My son was diagnosed 9 months ago when he was 17yrs old and about to sit A levels. So I was in your shoes not long ago. I spent hours researching on the net, time well spent. I would suggest you look into having crosslinking [CXL] which will halt the progress of the condition, not make it better but keep things as they are now. I wrote a brief synopsis of our story and how things have turned out ok for now. If you look for Good News Story on about page 2 or 3 of this General discussion forum it might help. Well I hope so anyway. Always ask for help too - I asked lots of questions and people were really kind in their answers. Good luck!

[Mousework]

Hi Carol,

I would not worry about it, but you need to discover if this is aggressive Keratoconus , and ask about ways to limit stress on the eyes.

[CarolFarish]

Thank you all so much for your kind words and encouragement .... at least we now have questions we can ask the specialist when we eventually get our appointment through. We shall definitely try and find out if it is aggressive keratoconus and we shall make enquiries about the operation that may help. I am not sure where the nearest place to us that they may do that would be as we live in Cumbria but we will travel to the other end of the country if we have to.

I found Jim's last eye test result which was done about 16 months ago and then he was slightly long sighted in his right eye (which is now the worst affected) and his left had perfect vision, now he seems to be only ever so slightly short sighted but has obvious astigmatism in his right eye and less of an astigmatism in his left but it seems both eyes are affected. Jim has a good attitude and will cope what ever as long as he can still play his sports he will be happy

[GarethB]

I was diagnosed at 17 and it never held me back, I continued with Rugby and after some advice from the Police regarding the speed that I would drive I took up rallying and all this just before my A levels.

In my case, the speed of progression was quite rare in the rapidity but if the same occured today, no graft would be needed due to the improvement in contact lenses that are available so now is a better time to have KC compared to nearly 25 years ago!

My first graft was immeduiatly after A levels and at the end of the holidays I was at Univeristy and I have been in work ever since, still persuing motorsport, partaking in rough games with my daughter and basically enjoying life as much as anyone else would.

KC only starts to have a negative impact on your life if you let it and the best support you can get comes from more than just the hospital or forums like this but from family and friends; the whole package makes it on the whole easy to live with the condition.

Plus with cross linking, the condition can be halted in its early stages.

[Andrew MacLean]

There is a health warning that goes with any consideration of cross linking.

Most people with keratoconus will never progress beyond the point where their condition can be managed by wearing glasses or contact lenses. This means that cxl is an expensive and, in these cases, unnecessary procedure.

Be sure that you have confidence in the surgeon or clinic that recommends the procedure before parting with your money.

Also; no procedure is free of risk. That said, IF cxl is clinically indicated, and if you can afford the procedure then it has provided a more stable cornea for many people.

Andrew

[GarethB]

If we are going to be putting warnings on such posts then to be balanced it must also be said that the wearing of contact lenses can lead to corneal abrasions, scarring and infection!

It is a fact that MOST people with KC wear contact lenses and for many they cause problems and if they had the choice they would wear glasses.

If I could have CXL, at the current prices being quoted privatly, when I was wearing RGP lenses, three years of solutions costs and lenses for would equate to the same as both eyes being crosslinked.

My daughter is 13 and has regular eye scans to see if she starts tod evelo KC. We have discussed with her what KC means to live with and as a family we have decided that the first signs of KC, if she is still in agreement she will undergo the CXL procedure. She then won't have the worry that many have that will the KC get worse, how will it affect me long term and if caught early she would avoid the expense of contact lenses and the costs of maintaining them.

Therefore in my opinion it is msleading to say CXL is an unnecesary expense for people whose condition is managed with lenses as CXL to date is yet to be shown to cause damage to the cornea long term since gaining polarity since 2008. In fact CXL has the potential to save these people money with little risk to health!