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Keratoconus (eye disease)

(17 Posts)
mynameissecret Sat 21-Feb-15 23:08:38

I keep getting told I have this and that's why my contact lenses don't give me great vision or my glasses. I've just googled it and realised it sounds serious should I be seeing someone else?

OhYouBadBadKitten Sat 21-Feb-15 23:17:02

I would be asking, especially if you are young and it is still progressing as it looks as if there is treatment to stop it worsening for some.

maggiso Sun 22-Feb-15 00:15:12

agree with Badkitten. There is now a new treatment (cross linking) that can stop or at least slow down the progression in some early progressive keratoconus, so if you are in your teens or twenties or appear to be getting worse, and have a diagnosis of keratoconus, it's probably a good idea to be assessed. It's still quite a new treatment, and only major hospital eye centres offer the procedure, (through the NHS) it sounds like you only have very mild KC, but it may still be worth getting checked out. There are strict criteria for treatment, so only those who are getting worse quickly are treated.

Karoleann Sun 22-Feb-15 09:16:26

You should be getting good vision with contact lenses, specialist lenses exist specifically for your condition, although that's right, you won't get perfect vision through spectacles.

Have you been seen by an ophthalmologist? I'd ask for a referral to your nearest big eye department.

amberlight Sun 22-Feb-15 10:18:46

Our DS has had the collagen cross-linking for both eyes, for keratoconus, and it's worked fantastically well for him. It even improved his vision slightly, which they weren't expecting. Definitely worth asking about, though it is indeed rare on the NHS at the mo.

muttynutty Sun 22-Feb-15 13:26:14

Yep do see someone- although our experience of NHS on this a few years ago was not great. I am not sure where you are but Accuvision have been fantastic with us for treatment and contact lens fitting.

Our son had crosslinking done with Accuvision and it has been amazing. His eyes have stabilized and even improved (although this is no quarantee). He is able to drive which would not have been possible if he had not had crosslinking.

It is worth searching to find an specialists as they should get contact lenses to suit you. You can piggy back lenses or their are specialist ones for people with keratoconus.

Don't hang around as the thickness of your cornea is vital to enable you to get crosslinking done - this can become too thin very quickly and then you have less options open to you. NHS at the moment I think are waiting to see changes in 6 months - this would have been too long for my son and he would not have been able to have had the procedure.

Redglitter Sun 22-Feb-15 13:32:57

I'd get a hospital referral. Glasses Won't help but lenses will

I've had it for 20 years I've had one transplant but it looks like another is on the cards sad

Gunpowder Sun 22-Feb-15 13:39:20

My optometrist suspected I had this. I got a referral via my GP to an orthopist at our local hospital who carried out some tests. It took about six months for the appointment so I'd get the ball rolling now.

Tests were quick and only a tiny bit uncomfortable, but take some dark glasses with you for afterwards as they dilate your pupils and it's hard to see. I don't think you'd be able to drive after the appointment either. Would also try and take copies of your changing prescriptions with you if you have them.

Mine turned out not to be keratoconus but hormonal and just really bad astigmatism, however I'm really glad I had it checked out.

thefemaleJoshLyman Sun 22-Feb-15 15:38:18

My DH has this. Only hard contact lenses will help, the front of the eye needs reshaping. It is a difficult condition which is not often helped by the fact that allergies often continue.

mynameissecret Sun 22-Feb-15 17:57:36

Is it linked to allergies?

Redglitter Sun 22-Feb-15 19:27:33

No its caused by a distortion of the eye

BerniceBroadside Sun 22-Feb-15 19:36:21

It's linked to allergies in that it's more common in people with allergies and eczema. Possibly because they are more likely to be chronic eye rubbers.

If you're on Facebook there is an active group who can advise re hospitals and treatment etc. https://www.facebook.com/groups/keratoconusGB/?ref=br_rs

Redglitter Sun 22-Feb-15 20:06:51

I don't have any allergies at all but have it in both eyes

Redglitter Sun 22-Feb-15 22:05:17

Thanks for the FB link smile

Ellesbelles71 Fri 09-Feb-18 20:35:46

I see this conversation is a few years old. My son was diagnosed with kc yesterday and am completely devestated as you would all understand. His specialist wants him to have the crosslinking as he is only young. How has it stood the test of time and if you can let me know any other information that would be great.

usainbolt Fri 09-Feb-18 20:51:54

I do understand your reaction but as I am a Mother to a DS with keratoconus there is no need to be devastated.

My son is now 23. He as first diagnosed at 7, nothing much could be done at that time but when he was 14 we researched the then new crosslinking. We paid privately to have it done as the NHS did not at the time do it on minors.

Crosslinking has totally stopped the progression of Keratoconus, he wears piggy back lenses (rgp lenses on top of soft lenses ) he can see to drive, party and play sport and is just finishing an MEng at Imperial in London. It has in no way prevented him doing what he has wanted to do at all.

We did epi off cxl. Do you mind saying who is your specialist? We have contact with a lot of People with may have had treatment with them.

Any questions don't hesitate to ask.

Your son will be ok.

Ellesbelles71 Fri 09-Feb-18 22:36:00

Thank you for responding usain. I am in Australia and I too will be paying privately as it isnt covered by the health system. He explained the benefits of epi off and is suggesting this. Im happy with my specialist as I did a lot of research into him before we went. He is top of his field and studied in the sydney eye hospital, us and the fellowship eye hospital in the uk and an honours student with masters as well as being on numerous research panels and societies around the world. As you would know its hard to find someone who had been through this. I cant thank you enough for you post it has put me at ease that we are doing the right thing for my boy

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