Rare Eye Condition and a Writing Career

I would like to share with you a little personal insight. I am generally a very healthy person. I don’t really exercise beyond walking the dog, but I do watch what I eat and am conscious about taking care of my body. Especially so now while I am breastfeeding my baby daughter.

My Treatment Plan for Rare Eye Diseases

There is one (or several) conditions I suffer from regarding my eyes. I hope that by talking about this condition I might reach out to other younger people suffering with the same thing. I have Lymphodoema Distichiasis. Simply put, I have two rows of eyelashes in both eyes, and the second row turn in and scratch my corneas. This condition has been present since birth, but as it generally only affects older people, it took a while to get a proper diagnosis. Indeed without my mothers insistence to the doctors, the situation could have been much worse. 

As it is I have severe scars on both eyes, worse in my left. This is where the lashes have turned in and scratched me repeatedly. Remember how painful it is when you get a speck of dust or a hair in your eye? That is how I feel every day. In an attempt to ease the symptoms I underwent many surgical operations as a child, where the eyelashes were removed using laser treatment to freeze and burn them off alternately. They kept growing back.

As I grew older the symptoms seemed to ease, until I reached the age of seventeen. Then they returned with a vengeance. I am still undergoing regular hospital treatment and taking daily eye drops and ointment now, at the age of 29. It will never be cured. Three years ago I had more surgical procedures to rotate my eyelids in an attempt to ease the pain. I also remove the eyelashes myself using tweezers when they grow in. I am pleased to report an improvement since all of this, but I still struggle.

Alongside the ingrowing eyelashes, I suffer from Dry Eye Syndrome. My eyes cannot produce enough tears to lubricate my eyes and protect them from foreign bodies. I am still undergoing exploratory treatment for this. And just last week I was diagnosed with excess keratin and papillarys in both eyes. Apparently I have raised bumps under the skin of my eyelids, and the rough skin at the back of my eyes extends forwards, both of which rub the corneas and give me that familiar foreign body sensation.

Catherine's New Glasses

So how do I continue to write, and how the heck did I manage to produce a novel while suffering all of this pain and discomfort? I gritted my teeth, tried to ignore it, and vowed not to be beaten by my stupid freakish eyes. I am far better off than many people who suffer far more life-altering conditions. At least I have learnt how to handle it, and can work through the pain. All I have to do is admit defeat on some days, leave the computer switched off, and give my eyes some time to heal.


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About SpookyMrsGreen

SpookyMrsGreen: Mindful parenting and modern pagan lifestyle. See my blog for exclusive special offers, discount codes, health advice, eco-friendly tips, book reviews and more! Search #TheRedcliffeNovels and meet the vampires and werewolves of Cornwall, England.
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8 Responses to Rare Eye Condition and a Writing Career

  1. Pingback: #AtoZChallenge – Hooray for our National Health Service! | Spookymrsgreen's Blog

  2. Pingback: #AtoZChallenge – Living with Chronic Pain | Spookymrsgreen's Blog

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  4. bluecloverdust says:

    Wow you are amazing to be able to still read and write!!

    • Thanks! I didn’t appreciate the severity of my condition when I was younger. I mean, as a child I got to skip school for a day at a time whenever I had a hospital appointment, and my parents bought me a new toy for being brave every time I had surgery. It grew my Barbie and My Little Pony collections very nicely! 😉 Seriously, though, I think reading has always been an escape from the pain. I can lose myself in another world, and generally forget about the pain in my eyes, except on days when it is particularly severe. Thanks for reading and commenting.

  5. Pingback: Happy Birthday, NHS! #NHS70 | SpookyMrsGreen

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