My Dry Eyes Don’t Play Nice With My Other Health Issues

I have multiple other health issues on top of my chronic dry eyes, which often feels like it just compounds it all. The main eye-related health problem is called corneal ectasia. Keratoconus is the most common type of ectasia (although not the one I have), but all corneal ectasias are quite rare.

What it means

It means my cornea (the eye’s outer layer) bends out of shape. Actually, I’m lucky: I can say “used to bend,” as I got a surgery (well... two, one for each eye) in 2019, and it stopped the progression of the disease. Fingers crossed it won’t start again!

It stopped the progression, but didn’t reverse anything, so I lost some of my eyesight forever. Most of the vision issues one gets with corneal ectasia are in the category called “higher order aberrations,” which can’t be corrected with glasses or normal contact lenses.

Other conditions

HOA can also happen with dry eyes! But of course, with dry eyes, correcting the dryness should help solve the problem, which isn’t as easy when the problem lies in the cornea itself... The only correction possible is using special lenses many in the chronic dry eye community know: scleral lenses. Those sit on the sclera (the white part of the eye) and the solution stuck underneath helps correct the vision (and keep eyes moist!)

My problem, though, is that I not only have chronic dry eyes and corneal ectasia, but also hypermobile Ehlers-Danlos syndrome, which is a connective tissue disorder. My ligaments, skin, internal organs, are all quite fragile. Joints dislocate, ligaments tear... and cornea is brittle. To top it off, I also have an auto-inflammatory disease and allergies.

Good days and bad

That eye health package means I often end up with eye inflammation and, quite regularly, with corneal erosion. Which means that, on a good day, while wearing my scleral lenses, I need to put special drops in my eyes at least every 30 minutes (my eye doctor prescribes Blink-n-Clean). Because even though solution is stuck between the lense and my eyes, it’s completely dry between the lens and the eyelid!

On a moderately bad day, I have to remove my lenses early, or unexpectedly (more than once have I had to dash out of a Zoom meeting!) and my eyes are slightly irritated for a bit.

On a bad day, I might not even feel there’s a problem, or just a slight irritation... but when I remove the lenses it stings, it burns, it’s like I’m being poked with a needle... at times the pain is almost as bad as after my eye surgeries!

Making things worse

I might have to spend hours with a cold cloth on my closed eye(s), after taking anti-inflammatory meds and using my anti-inflammatory drops. If the issue was caused by allergies, I’ll of course also use my antihistamine drops. And I already am using Muro 128 every night (prescribed by my ophthalmologist, as my corneas are quite thin and fragile due to my hEDS).
It’s quite obvious that the chronic dry eyes just make all of these issues so much worse!

When inflammation, irritation or erosion happens, I need to spend a few days without wearing the lenses... and then start wearing them again gradually.

Even with all the precautions I take, this seems like a never-ending cycle, and it tends to make me grumpy. More on this in an upcoming article!