#keratoconus

[keratoconusgroup]

we'll see

[melissymel]

Headcanon: Mel King has Keratoconus (a progressive cornea disease)

lil hc just for myself cuz I am also named Mel and I have keratoconus.

⚠️do NOT google it unless you are prepared for eye body horror⚠️

More about my HC & the disease below the cut

Disease info

Keratoconus (KC) is a progressive disease of the cornea that causes it to bulge/sag leading to warped vision. There’s an issue with the proteins in the collagen in the cornea. People often get misdiagnosed as having as astigmatism first because of the presentation (that’s what happened to me until I was in my mid 20s). You get double vision (often several doubles), halos, glare, blurriness, and sensitivity to light. The progression is unpredictable. There is no cure. Only treatments like the corneal cross-linking (CXL) procedure ⚠️again do not look that up unless you are prepared to see eye surgery, I’m so serious⚠️

More Headcanon

Mel still wears glasses because either the disease hasn’t progressed to the point where they’re no longer helpful or, like me, she only has a prescription in one eye (because the other is beyond help). Also because I cannot IMAGINE her having to wear her scleral contacts for an entire 12 hour shift. OUCH! Scleral contacts are hard pieces of plastic that you fill with sterile saline to basically create a faux cornea with the correct shape. They are uncomfortable if not painful to wear.

Mel had to wait until her med school insurance kicked in to get cross-linking. It was incredibly stressful not only because of the financial burden and horrific recovery pain, but also because she had to figure out care for her sister during the recovery ❤️‍🩹

I think she would love being a participant in the Epithelium-On Corneal Cross-linking study that I was a part of. Although, I don’t know how doctors feel about being in FDA trials. Maybe she wouldn’t have felt comfortable doing something that’s not FDA approved yet. My reasoning was that epi-on CXL is way less dangerous to your vision. So in my good eye, instead of letting the disease progress to the point where the traditional/FDA-approved epi-off CXL was worth the risk of worse vision, I opted to try to freeze my vision while it was good. I could imagine a doctor trying to preserve the good vision in their better eye too (KC progression is different in each eye and a lot of people have one eye that’s much worse than the other)

Mel only takes the bus (or walks) because she can’t drive at night without her scleral lenses and who tf wants to put a big, hard chunk of plastic in your eye at the end of a long shift just to drive the 10-45 mins it takes to get home

When Mel got diagnosed she IMMEDIATELY set up an appointment for Becca with a an ophthalmologist because the cause of KC is unknown and there is thought to be a genetic component

Mel always shows Becca the images of her test results because they’re very colorful and interesting to look at and it makes the information less scary (I am AuDHD and seeing the colorized topographical maps of my corneas is my favorite part of all my visits). Here’s some examples:

I doubt anyone read this because idk if anyone knows what KC is or cares haha but if you did, thank you for coming to my Ted Mel Talk ❤️

[youcandalekmyballs]

oops. i said my tumblr beliefs out loud at work.

if a person is in prison, and their dr recommends them for a procedure (in this case, corneal cross-linking), the government should have to pay for it, right? it doesn't matter that it's expensive (that's a story for another day) because at least 2 drs filled out the proper paperwork and therefore clearly think the pt could benefit from it.

should the government have to pay for (non-emergency) surgery for an inmate?

yes

no

Voting ended onAug 26, 2025

sorry, no nuance button. more on my actual argument below.

my coworker posited that we (the taxpayers) shouldn't have to pay for this surgery. i argued that because poc are more likely to be put in jail, the government not paying for surgeries like this disproportionately impacts poc. i was told that wasn't part of what she was arguing, so i said i didn't trust the legal system to correctly convict people. my coworker said that wasn't what she was arguing, either, so i gave up because she clearly has her mind made up.

[sparksinger]

another check in before i undoubtedly disappear off the face of the earth again

hello.

idk if anyone even stumbles into my dusty little corner of the internet anymore...but if you do, hai! :3

i haven't been on tumblr for months, been dealing with some health stuff.

my eyesight has been slowly deteriorating for years, before kicking up a gear and changing rapidly in the space of three months towards the end of last year.

lots of scans and appointments later, it was ascertained that i have keratoconus, a disease of the cornea which causes it to bulge out in a cone shape and become thinner as time goes by. there is no cure and does not cause outright blindness, but does significantly impact vision.

and i have it in both eyes. yay!

my left eye was worse off and i needed surgery asap before we got to the point that cross-linking (surgical procedure to stop the deterioration of the corneas due to kc) was no longer feasible. i was within the threshold by one measly micron. a healthy cornea is 550 microns and the minimal thinness of cornea for cross-linking is 400. my left eye was 401. :)

after that it would have had to have been a corneal transplant, or become legally blind. i would have no longer been able to drive or work.

the procedure i needed was an 18 month waiting list on the nhs so i went privately and that cost a pretty penny or two. i think in the last six months or so, i have spent close to £5000 on my fucking eyes.

and the procedure i needed wasn't available locally, so naturally i had to travel to london to have it done. to be fair, it wasn't too bad. my grandmother still lives there so i was able to see her at the same time, so that was nice.

i am a week post surgery today. mostly the pain is done, just have a very gritty sensation and it feels like its too big for the socket if that makes sense. i can only look at screens for so long and at quite a low light.

so, yeah. haven't been writing at all. haven't had the inclination, spoons or inspiration to. maybe that will change. i hope it will. i miss it.

i hope whoever is reading this had a lovely christmas period and new year.

take care. ♥`

[limeade-l3sbian]

eye condition so rare they sheepishly ask if they can have some students come in to take a look (i said yes)

[gustaving]

By Kwame Dawes, from Versus Versus: 100 Poems by Deaf, Disabled & Neurodivergent Poets (2025)

[serikyl]

It’s maybe dumb but I really am never gonna get over just how life changing my scleral lenses are

[elevenpurrs]

KCN #2 | PAGE 26