17 and worried!

[gemma02]

Hello, I have recently been diagnosed with suspected KC in my left eye. Having 20/20 vision before it came as a real shock, and after doing some online research I'm feeling pretty down about it all! I have to go to the hospital to have it confirmed, but two opticians were pretty sure it was KC. One optician said it wouldn't get any worse, but after reading information I'm now aware it is progressive?! I'm super scared to be honest and just need some reassurance and a true answer to what it is! Will I end up blind?!

[CrippsCorner]

Good and bad... no, you will not go blind, but left as it were your vision would likely deteriorate further. However, hopefully you'll be eligible for CXL which is an (almost non-invasive) procedure which can halt the progress! I only got fully confirmed of keratoconus late last year and yes it can be very scary at first, I certainly did have many down days. I've had lots go wrong in life and have come to understand you need time for the realisation to set in.

Do you currently wear glasses? This is how most of us start. At the moment I'm going through various contact lens fitting kits to see if I can get any improvement with my vision.

If your optician has told you it isn't progressive that would suggest to me he doesn't know much about keratoconus. I would search until you find someone that really understands the condition and will be able to help you. There's a list of known opticians on this website with keratoconus experience, but be aware going private is very expensive... for instance contact lenses with them came to a total of £465, whereas in the NHS they're only £108.

I'm not going to tell you what to do because everyone's eyes are different, however inevitably you will most likely end up with contact lenses and you'll probably hear a lot of horror stories about hard lenses. Many people though, are able to use specialist soft lenses that'll hardly impact your life.

Try and keep your head up and feel free to reply here or send a private message if you'd like any help or suggestions. Good luck!

[gemma02]

Thanks - that's made me feel better!
I got prescribed glasses (that are on their way!) as she noticed I had an astigmatism and was very midly short sighted. Ah so does the cross linking process actually stabilise it? It's not really affecting me much at the moment as my right eye is (currently) unaffected, but I am aware it usually results in both eyes (correct me if I'm wrong!)

Also would I be right in saying it's more an irritating condition that a 'disability' as such? Sorry for all the questions!

[munster]

Thanks - that's made me feel better!
I got prescribed glasses (that are on their way!) as she noticed I had an astigmatism and was very midly short sighted. Ah so does the cross linking process actually stabilise it? It's not really affecting me much at the moment as my right eye is (currently) unaffected, but I am aware it usually results in both eyes (correct me if I'm wrong!)

Also would I be right in saying it's more an irritating condition that a 'disability' as such? Sorry for all the questions!

In basic terms, cross linking (CXL) strengthens the cornea by helping to build new links in the structure. Then the UV light activates the riboflavin and results in premature ageing of the cornea to help make it more rigid and less malleable.

KC tends to occur in both eyes at some stage. Not all the time, but 90%. It can start whenever it chooses, and can progress at different stages.

I was diagnosed in 2004 when I was 30. Before then, I was driving and going around life without a care in the world, and without needing glasses or lenses. Four years later, I was fighting to get my vision corrected as my KC advanced aggressively to the point I could only just make out the top letter of the eye chart. I'm still battling with lenses, and trying my best to avoid the corneal graft.

Good luck, and don't be afraid. I recently seen an optrom from Vision Express, who just so happened to have done a masters degree study on KC. She said that anyone who gets diagnosed with KC should really be counselled, as its a shocking, life changing event.

[gemma02]

That last paragraph has freaked me out! I'm just gonna wait until my hospital appointment and hope for the best thank you for the info on cross linking!

[munster]

That last paragraph has freaked me out! I'm just gonna wait until my hospital appointment and hope for the best thank you for the info on cross linking!

It wasn't meant to freak you out.

Basically, she was saying that when we get diagnosed. We really get no information on what happens and how things will change. For most people, its a difficult concept to grasp when your told that your vision will start to progressively degrade. Then your thrown out on to the street, so to speak.

[gemma02]

Ah okay, yeah I agree. I'm just gonna try and think that it's just an irritating condition that I can deal with - it's gonna be a pain but there are lots of options that can be done.

[GarethB]

As one regular posted says on here, KC is a bespoke condition and no two cases are the same. Your KC may remain stable or it could get worse, only time will tell but there are far more treatments available to those with KC than there was even 10 years ago.

Most people cope perfectly well for the rest of their lives with either glasses or contact lenses and there are many types of contact lenses available and research continues to improve these on a daily basis with new lenses coming to the market every year.

From my experience of support groups over the past 10 years those generally seeking supoport are those who are currently having a hard time with the condition for a variety of reasons and those who are newly diagnosed, so quite often you will see the more extreme end of the condition.

The important thing is Don't Panic!

Prepare a list of questions for your hospital visit and if at all possible toake a friend that can work through asking the list of questions you have and write down the answers. During the consultation we often need to be still while the consultant looks at our eyes but they sometimes talk you through what they are doing. So having a friend to aske the questions and take note makes it easy. If you have a smart phone or tablet with yo, you can often record the audio of the consultation to go back to later.

Don't be afrard to ask additional questions as they occure during the consultation.

Get the contact details, phone number, adress of the clinic and if possible the consultant because no doubt after the consultation you will think of more questions and you might not want to wait until the next appointment. If you have a lot of questions, write a letter.

Plus don't be afraid to ask questions here, people will do their best to help, but asking people about their experiences, like I said can reult in the more extreme cases being shared.

People coping well with the condition, such as myself having being diagnosed at the same age as you and having had the condition for over 25 years now rarely post. In that time, KC has only been a problem for a total of about three years!

Good luck.

[space_cadet]

it is very rare for KC to cause blindness as in no light perception, howedvver from personal experience KC can and does cause legal blindness (a inability to see the eye chart desite visual correction)

I wish when I was diagnosed in 2009, that someone had the guts to tell me how severe my KC would have become, but no one did, instead they sugar coated things which even now I am ratehr resentful over.

Sorry to be the one to tell you the worse case senario but you do have a right to have a honest answer to your question.

with some luck your KC has been spotted early enough n is at a early enough stage for you to have cross linking and slow down the acceleration of this truely ghastly deliberating disease.

Lea x

[James_Ldn]

Hi Gemma,

Once you have the keratoconus diagnosis confirmed, I think the best thing to do is to speak to a consultant about having cross-linking done (either through the NHS in some areas, or privately if not).

Keratoconus can cause problems, but if you can stop it progressing as early as possible (which is what cross linking does), then that can obviously make things a lot easier when getting contact lenses or glasses which work for you.

James.