Something that happens because of my ichthyosis (and sometimes for other people with the condition) is light sensitivity and extremely dry eyes. Yesterday my eyes were very bad – it took a while for my eyes to stay open, and I wore sunglasses inside for a short time.
My lower eyelids are ectropian, meaning they are turned outward.
This causes my eyes to weep and then become very dry (with corneal abrasions), because my eyelids don’t hold the tears. I also have very little body hair, which means I have sparse eyelashes, and so skin and dust gets in my eyes. So I am constantly dabbing at my eyes with a tissue – you might have seen this on Zoom presentations I’ve done recently.
Sometimes I wake up with sensitive eyes, or they worsen through the day – it often happens on overcast days like yesterday.
I found out about how ectropian eyelids are a symptom of ichthyosis and how they impact me when I was about 20, when on a bright, yet grey sky day, I couldn’t keep my eyes open when driving to work at Kmart. I kept having to pull over. The lights instore also hurt my eyes. While I managed to drive to work and home again, Mum took me to the ophthalmologist the next day, where they explained all of this to me. I must have had these symptoms all of my life and they were most noticeable that day in 2002. I’ve been managing my eye care ever since (I now attend the hospital Opthamology clinic yearly).
I try to wear sunglasses when I am outside, especially when driving, and in recent years, I’ve had to wear them inside while my eyes adjust to the light. I also use eye drops and gels (stocked up on more today – Poly Tears/Gel and Genteal are good) and make sure I put paraffin ointment around and in my eyes before sleep. And I also use light adjustment and text to speech functions on my phone, iPad and computer if I cannot open my eyes to read. I also rarely drive at night (the lights are too bright), love a dimmer light switch, and I take lots of antihistamine because on top of light sensitivity, my eyes get affected by allergies!
Some friends with ichthyosis have had to have surgery involving skin grafts to tighten their eyelids – though I’ve not had to yet. Some friends have also lost vision due to corneal abrasions. My eyesight has not deteriorated too badly – though I got low strength reading glasses at the end of 2017.
This light sensitivity is quite a serious aspect of ichthyosis which I don’t often discuss – proof that it’s more than just a cosmetic skin condition.