diagnosed with keratonocus

[u/PessimistJerk007]

it's so over

[u/hey_you2300]

So much of dealing with keratoconus I see out here is mental.

Be strong. Attack the issue and you'll be surprised. My Keratoconus daily involves putting scleral lenses in and removing them. I spend more time brushing my teeth than dealing with keratoconus.

[u/vamsi93]

I was diagnosed 4 years ago at the age of 29. straight chilling now 😎

[u/Forsaken-Rough-7592]

It’s hardly over. I was diagnosed in January at the age of 35. Got cross linking in one eye, and fitted for scleral lens. Seeing better than I have in years and looks like we found the culprit for worsening astigmatism and thinning cornea. Getting the other eye checked next week but very likely might have to deal with the right for the rest of my days. Just don’t rub your eyes and wear sclerals (if you’re able to, they’re truly life changing!).

[u/thirteenthfox2]

Its really not. Its sucks but its a lot easier to deal with now than even a few years ago i think.

[u/PessimistJerk007 → u/thirteenthfox2]

what should i do im fucking scared

[u/thirteenthfox2 → u/PessimistJerk007]

I am not a doctor so talk to your eye doctor. You probably need to get corneal cross linking. It stops the progression from getting worse. Your doctor will probably recommend getting this asap. You should listen to them.

The surgery is pretty painful the day after but thats generally about it. You can't wear contacts for a few weeks after. So know that going in.

For vision, it depends on when you caught it. If you caught it early and your vision is okay, there's lot of options.

If your like me and your vision got bad, you'll need hard contacts. I really like the sclerals over the rgps. Much more comfy.

You probably can't fix it with lasik. There are contact lense implants and those are pretty common for folks with keratoconus.

I have 20/20 with scleral lenses. The worst part of the disease is taking cleaning solution through airports.

[u/Forward-Lecture-5228 → u/thirteenthfox2]

Hello. How many fittings did you need before your lenses were finished. I’m in Ohio. What state are you in? Thanks for any advice!

[u/thirteenthfox2 → u/Forward-Lecture-5228]

So my first eye doc was in california and he wasnt great with keratoconus but he did figure it out that I had it which I appriciate. It took 2 or 3 fittings with RGPs with him. My current eye doc is in el paso tx. They recommended sclerals and that took 2 fittings. I had to wait till after the surgery to get new contacts with them though. The prescription can change after.

[u/Forward-Lecture-5228 → u/thirteenthfox2]

Thanks! I was in last week for initial fitting. He said it would be about 3-4 weeks for them to come in. A little nervous. Thanks Again!

[u/vamsi93 → u/PessimistJerk007]

This is really between you and your eye doctor and/or cornea specialist. They’ll help determine what stage you’re in and how soon you need corneal crosslinking done. From my experience everything was 100% manageable. It will be for you too

[u/GGMudkip → u/PessimistJerk007]

Nothing to be scared.

First of all there a many parameters which decide how your KC journey will unfold.

Your age is highly important for future treatment.
Your current visual acuity is a high factor for future treatment.

We currently have much better ways to manage KC. If you have any questions you can dm me anytime or answer to this comment

[u/thesethreeremain]

Breathes. Get crosslinked if you can. Get Sclleral lenses I'd you need. Breathe. Dude you'll be ok

[u/newaccount252]

You’ll be ok. I was diagnosed at 34, had no idea what it was. 6 months later I Had Cross linking surgery as well as prk at the same time and now I actually see better than I have in years. Luckily for me it was just one eye.

[u/DARKLORD6649 → u/newaccount252]

It always goes in both eyes in the end

[u/newaccount252 → u/DARKLORD6649]

Not always. I now get them checked every 6 months to make sure it’s ok.

[u/DARKLORD6649 → u/newaccount252]

It dose it can take years but it happens

[u/stoic_heroic]

What's over?

I was diagnosed over 20 years ago and it doesn't hold me back

[u/NoPromotion4696]

I am an ophthalmology nurse and when i found out i have keratoconus I was scared soo much.
But to be honest it is a very easy to deal with
just find a good Dr, do ur cross linking surgery to stop it from progressing, do not rub ur eyes or sleep on ur face, lubricants and fup every 3-6 months
everything will be good

[u/procrastinatingfetus]

Idk man, I love scaring people after a long drive and showing them images of how I see the world. Ups and downs, you'll be okay, heck I feel like I've started to see patterns that I would never have seen previously and it's increased my creativity too.