#keratoconus

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: