Recently Diagnosed teen that is very scared

[SantiMoreno]

Hello, i am a 15 year old male and about a month ago I was diagnosed for Keratoconus in both eyes, with my right eye being pretty much completely blurry and my left one perfectly fine and not blurry. I was diagnosed by an oftamologist, and after directed to a specialist in corneas to decide on treatment. I plan on going to meet the specialist next week but i wanted to ask a few questions beforehand that have been nagging me since i was diagnosed. First of all, I am very scared, since I did a little research and have found out that it progresses over time. I have always considered myself to have good eyesight, so since discovering i have KC, I have been frightened of how bad it will get. Im not sure what treatment I will get, but my oftamologist recommended either corrective lenses or cross linking (he was more inclined towards CXL since the lenses can be very uncomfortable). I did a bit of research on crosslinking and found that it doesnt even completely treat the KC, just stops it from deteriorating. Upon learning this, i got ever more frightened, since my eyesight in my right eye is literally completely blurry, with no difference between far away objects and close ones, so even if i do get the procedure done, my right eye will remain terribly useless.
I just want to say i am very scared of my future. Since being diagnosed, I have noticed how bad my eyes actually are and how it really affects my daily life. I have had several cases during school where i can barely read, with my eyes blurring randomly. I am also very scared of possibly needing to get a cornea transplant, which i have heard many terrifying things about.

To finish, im going to leave my main questions.

1. If untreated, will I go completely blind?
2. How do I know how severe my case is?
3. Should i be and is it normal to be scared of KC?
4. Is it possible for my eyesight to ever get better?

Then again, most of my questions will be solved next week once i visit the cornea specialist.
Anyway, thank you to whoever answers or responds to this, i have been struggling for a while, so speaking about this made me feel a little better. No matter what happens, i will try to be positive as much as i can.

[Anne Klepacz]

Hello and welcome to the forum.
Yes of course it's natural to feel scared when you find you've got an eye condition that almost no-one has ever heard of and which affects you at an age when you've got your whole future ahead of you. And because KC usually affects one eye much more than the other, the good eye takes over so often it's not until the brain can't compensate any more for the different images it's getting from the two eyes that you realise that anything is wrong. So yes, it's natural to be scared, but no, these days you really needn't be! As you've already discovered, there is now a treatment called crosslinking which can stop KC from progressing and already means that very few young people will go on to ever need a corneal transplant. So there are far more options for people diagnosed now than there were even 10 years ago, and KC should now have much less impact on people's lives. As well as crosslinking, there are constant advances in contact lens technology with lots of different materials and designs, so they don't have to be uncomfortable!
I'm sure the specialist you see next week will be able to reassure you about your KC. One thing to remember is that KC can be very different in different people and different eyes. The trouble with the internet is that you find all the worse case scenarios, but the vast majority of people with KC, even before crosslinking was invented, lead pretty normal lives - we have members who have qualified as doctors, teachers, all sorts of careers. Once you're on a treatment pathway, whether that's crosslinking or contact lenses or both, things will obviously be easier. In the meantime, have you seen the leaflet about KC that you can download and give to your teachers so that they understand the difficulties you're having right now?
https://www.keratoconus-group.org.uk/in ... ratoconus/
I don't know where you live, but if you're anywhere near Birmingham, there's a meeting on Saturday which you'd be very welcome to come to - a chance to see that we're all ordinary people living our lives! (and to hear an interesting talk). You'll find details of that on the events ticker on our home page www.keratoconus-group.org.uk
And if you're in another part of the country, look out for the announcement on the ticker of our next Zoom meeting which should be in the next month or two.
You'll find lots of other information on our website, including talks about the latest research. But please come back with any other questions that you have. And do let us know what happens when you see the specialist next week.
I'm going to copy this thread to the general discussion part of the forum as well, so that more people will see it.
All the best.
Anne

[ClareNZ]

Hi
Our son was diagnosed with KC in November 2022 aged 20 years and had CXL almost immediately in both eyes. One eye is bad and basically has no usable vision but his other is pretty good so is maintaining his overall vision pretty well with prescription glasses. He's worn glasses since he was 18 months old for other reasons.
Although I was really concerned when we first got his diagnosis, I can see that on a daily level his vision does not affect what he's able to do and it's easy to forget he has the condition. It doesn't seem to have affected his education or work-life. He's never been into physical sport (possibly due to his glasses and vision??) but is into esports both socially and semi-professionally. I would say the only thing he's not keen to do at the moment is learn to drive, but this might change over time if he gets fed up with public transport.
I'm not sure that he's really thought much about how things could deteriorate in the future, and to be honest we haven't had a big discussion about this but he knows there are other options for the future if needed.
I hope this helps to hear another younger person's experience and that you are able to be reasured about current and future options.
Clare