Dealing with anxiety and depression from KC

[Mal97]

Hi all, I'm a 21 yr old student, diagnosed officially around 3 years ago but only recently got really bad

How do you guys deal with the anger that comes with accepting your vision is no longer what it once was and unlikely to ever be again. My right eye was always worse than my right and after crosslinking in october on the right I have noticed ghosting so much more, really regret having the surgery as it seems to have done nothing for my eye apart from making it worse!

My left eye is now showing signs of KC progression and has made me upset as I always convinced my self that maybe my left eye would just stay short sighted and not develop KC but it seems to be progressing quite a lot and I'm scared to have crosslinking on it due to the problems I had with my right and get ghosting. Should I go ahead with crosslinking on the left or is it not worth it, I don't know whats worse ghosting or blurry vision.

Currently typing this with an eye patch over my right eye and anytime I'm about at night I hyperfocus on my eye sight and get angry when I see how much ghosting is present and constantly close and reopen my right eye. I'm just generally angry, afraid and upset. I'm final year at university and reading my laptop for hours at a time is proving difficult now.

I'm waiting on contact fittings but in 4-6 weeks, do these generally correct KC quite well? I'm just over thinking everything like imagining going travelling after uni and then losing my lens, what will I do then? My best scenario would be to get a cornea transplant but my optician waved it off when I brought it up.

Would just like to hear peoples experiences with KC, have you managed to live with out a reduction in your quality of life, because at the moment everything just seems horrible. I know there's many posts on here but a reply would make it feel more personal and make me feel less alone. Thanks

[Grant]

Hi Mal,

Obviously I can only speak from personal experience however I find that contacts make a significant different to my vision. Without - can't read the top row on the Snellen chart, With - 6/9 or even 6/6 on a good day.

I can understand the anger and depression, I was in the same place after I was diagnosed, most if not all KC sufferers are probably the same. Maybe have a word with your GP, or is there a student support team you could contact? With the current focus on mental health I would hope there would be a degree of support from your Uni? Maybe also have a conversation with your tutor to ensure it's factored into your final score/marking?

[Lia Williams]

Hi Mal,

I'll try to answer some of your questions.

I'm waiting on contact fittings but in 4-6 weeks, do these generally correct KC quite well?

Contact lenses generally work very well for keratoconus as they effectively make the irregular cornea shape spherical which helps to reduce the ghosting. You might find it helpful to view Waheeda Illahi‘s talk from the 2018 Keratoconus Group conference where she describes contact lenses and how to get the best out of your appointment. The talk can be found here:

https://www.keratoconus-group.org.uk/in ... deos-2018/

I'm final year at university and reading my laptop for hours at a time is proving difficult now.

The group has produced some useful leaflets, in particular you might find the "Supporting Students with Keratoconus" useful
https://www.keratoconus-group.org.uk/in ... factsheets

My best scenario would be to get a cornea transplant but my optician waved it off when I brought it up

Although this might seem to be the ideal solution it is not an instant fix to keratoconus and some people still need to wear contact lenses or glasses after the transplant. Don't forget it is surgery which cannot be undone. Corneal transplants are usually only done when vision can no longer be corrected with contact lenses. That said if contact lenses are no longer working then a transplant may will restore vision.

have you managed to live with out a reduction in your quality of life, because at the moment everything just seems horrible.

Finding out that you are not just short-sighted is horrible especially when no one appears to have heard of keratoconus. I found out that I had KC nearly 30 years ago when I went to get a new pair of contact lenses. It was quite a shock as I was told to go home and leave my old lenses out for three weeks before I could be refitted. However after being refitted with a new pair of contact lenses my life as carried on as normal. Refits for me never seem to be straightforward but in between times I don't really have a problem.

I hope this helps,

Lia

[Green]

It is a tough condition, however you feel is justified and it's OK to feel afraid, angry & upset - give yourself outlet for that. The mistake I made in my youth was to hold it all in and be stoic, so let the pressure out however you need.
Lenses are an adjustment, be patient, build up the wear time gradually, but they can offer very good visual acuity - but don't over wear them, listen to your body.

[CrippsCorner]

How do you guys deal with the anger that comes with accepting your vision is no longer what it once was and unlikely to ever be again. My right eye was always worse than my right and after crosslinking in october on the right I have noticed ghosting so much more, really regret having the surgery as it seems to have done nothing for my eye apart from making it worse!

Hi... I can feel your frustration as the same thing happened to me. My better eye became my worse eye after failed CXL I kick myself for going through with it, especially having to pay for the privilege! My situation was slightly different to yours though, as I had CXL go well on my other eye first of all, therefore I didn't give it a second thought going for it again.

Would I recommend it for your other eye? Man I don't know, very hard question to answer. I probably would, because you're still so young and it can still progress a lot, but it's totally understandable to not go through with it considering what has happened to you. Might be worth seeing if you can get epi-on, which I understand isn't as effective, but comes with lower risks.

I would say I think about my keratoconus every day. It's often heartbreaking. I've been thinking about it a lot recently because I was looking to move away to a cheaper area, but the fact I can't drive in the dark really limits what kind of commute I can do.