This Author’s Health Journey

We all have a story. Every single one of us, whether we write about it or not. My fictional stories are inspired by real-life events, experiences and perceptions, albeit with a little paranormal twist… hey, I like to liven things up a little bit! A big part of my personal story is my health. I am generally a very healthy and happy thirty-eight-year-old woman. I have had two successful pregnancies with very minor complications during labour. But I have been in and out of hospital all my life.

I have a rare genetic disorder called Lymphodoema Distichiasis. You can’t even pronounce it, can you? I had to practice a little when the diagnosis officially came. I carry a recessive gene, called the FOXC2 gene. It means that my body produces anomalies. For me those anomalies include a double row of eyelashes in both eyes. My eyelashes grow on the inside of the eyelid, and they turn in so that they scratch my corneas. I have severe scarring in both eyes, and I have routine minor surgery procedures to remove the extra eyelashes using lasers. In between hospital visits, I pluck the offending eyelashes out with tweezers. Not pleasant. It is very painful and can be very debilitating, but I am not the sort of person to let that get in my way. More recently I have been diagnosed with a chronic pain condition as a result of the distichiasis and Dry Eye Syndrome. The nerve endings on the surface of my eyes are inflamed and make me feel like I have something scratching my eye even when I don’t. It causes a lot of pain, and I never have enough natural tears to ease it.

You see, that is my story. One author, one rare genetic eye disorder. It could have caused me to give up my job, my ability to drive, even my independence, because it got so bad at one point. But I refused to submit to the pain and the discomfort. Instead I sought alternative methods of healing, which brought me to my current training in Reiki. That is a higher vibrational energy healing system that we can all tap into, and I find it incredibly helpful for my health condition. It will also find its way into my stories and has even inspired me to plan some non-fiction books based on my experiences.

What are your life experiences, health or otherwise? How do they inspire and inform your career choices, your hobbies, your way of life?

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This Author’s Health Journey

We all have a story. Every single one of us, whether we write about it or not. My fictional stories are inspired by real-life events, experiences and perceptions, albeit with a little paranormal twist… hey, I like to liven things up a little bit! A big part of my personal story is my health. I am generally a very healthy and happy thirty-five-year-old woman. I have had two successful pregnancies with very minor complications during labour. But I have been in and out of hospital for all my life.

Photo Credit 

I have a rare genetic disorder called Lymphedema Distichiasis. Yep, you can’t even pronounce it, can you? I had to practice a little when the diagnosis officially came several years ago. Basically, it means that I have a recessive gene, called the FOXC2 gene. It means that my body produces anomalies. For me those anomalies include a double row of eyelashes in both eyes. My eyelashes grow on the inside of the eyelid, and they turn in so that they scratch my corneas. I have severe scarring in both eyes, and I have routine minor surgery procedures to have the extra eyelashes removed using lasers. In between hospital visits, I pluck the offending eyelashes out with tweezers. Not pleasant. It is very painful and can be very debilitating, but I am not the sort of person to let that get in my way.

Photo Credit 

You see, that is my story. One author, one rare genetic eye disorder. It could have caused me to give up my job, my ability to drive, even my independence, because it got so bad at one point. But I refused to submit to the pain and the discomfort. Instead I sought alternative methods of healing, which brought me to my current training in Reiki. That is a higher vibrational energy healing system that we can all tap into, and I find it incredibly helpful for my health condition. It will also find its way into my stories, and has even inspired me to plan some non-fiction books based on my experiences.

What are your life experiences, health or otherwise? How do they inspire and inform your career choices, your hobbies, your way of life?

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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.

There is one (or several) conditions I suffer from regarding my eyes. I hope that by talking about this condition I might help 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 mother's 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 and 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 eyelashes 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.

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.

For more information on Lymphodoema Distichiasis and Dry Eye Syndrome please see the following article: Dry Eye Syndrome and Associated Eye Pain