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How I Manage my Rare Genetic Disorder

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You might have seen my previous blog posts about the rare genetic eye disorder that I live with. Over the years I have called it an illness, a disease, a pain in the backside, and a few other choice words that I won’t repeat here. I finally settled on referring to it as a rare genetic eye disorder, because that is basically it. My husband simply calls it my “freaky eye thing.” He is very supportive, as you can tell!

Well, on New Year’s Eve I found myself back at the Manchester Royal Eye Hospital for a check-up at the Dry Eye clinic. I am registered as a patient with two clinics at the same hospital, the other one being Plastic Surgery. Since there is no need for me to have surgery at present, they passed me back over to the Dry Eye clinic to be monitored. That is all they can do now. My eyelashes continue to grow back on the insides of my eyelids, and I pull them out with tweezers when I can. I don’t produce enough natural tears, so I ease the pain with three types of eyedrops, an overnight eye ointment, and an eyewash product that seems to help.

eyehospital5

I did ask the doctor if there was much point in me returning to the hospital in Manchester for a ten-minute consultation where not much changes. I mean, yes, I do need the eye hospital. When my eyes are bad, I can barely move, let alone think straight, but I still have to take myself up to the hospital, which involves driving approximately thirty miles from home. I also asked the doctor whether I am still fit to drive, since I feel that I have struggled a lot more during the past few months than I used to. She assured me that all the tests show no further deterioration, and that I am fine. I don’t always feel fine, but at least the doctors seem to think so, and they know best, don’t they? Anyway, I will now be retained for twelve monthly appointments, just so they can monitor my condition and remove any ingrowing eyelashes that I can’t pull out myself.

Officially I have two diagnoses: Congenital distichiasis, and Bilateral dry eye symptoms. I have not yet met anybody with the same or similar symptoms. Occasionally I find someone who has Dry Eye Syndrome, usually caused by wearing contact lenses, but theirs is mild compared to mine. I have tiny plugs in my tear ducts to try and retain some natural lubrication, I have scars on both eyes from all the surgeries I had as a child, and from the scratching caused by ingrowing eyelashes over the years. I have tiny scars from eyelid rotation surgery that I had approximately ten years ago. And now I carry on as normal. My eyes are always sore. In fact, it is a rare day when they don’t hurt. Life is always a little bit blurry, and lights are just slightly too bright, especially those new LED ones. I have learned to live with it and keep on going. But I would love to speak with somebody that has distichiasis (apart from my brother and dad). Surely I can’t be the only one?

 

 

Catherine is the author of the adult paranormal romance series The Redcliffe Novels and also The Darkness of Love, She has short stories published in YA anthologies, freelance articles on various industry websites, and contributes to her personal blog, and her author blog .

You can find Catherine on Facebook and Twitter

 

 

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