I live with rare eye disease, a condition known as Lymphedema Distichiasis. For me the main disorder is the distichiasis, which basically means I have eyelashes that grow on the inside of my eyelids and scratch the corneas. All my life I have been treated with laser surgery and cryotherapy, and in my twenties, I had eyelid rotation surgery to try and alleviate the pain caused by the eyelashes scratching my eyes. Before starting a family, I went for genetic testing to try and establish the likelihood of passing on my condition to my children. I discovered that I carry the FOXC2 gene, which is the cause of my congenital eye disorders.

It has taken over ten years to formulate a treatment plan that helps keep my eye condition under control. There were times in the past when I literally wanted to rip my eyeballs out because the pain was so intense. I tried different types of eye drops and ointments, and discovered that I am allergic to preservatives, which limited the treatment I could receive. More recently there have been new eye care products introduced to the market, and now I find it much easier to treat the symptoms of distichiasis, which include severe Dry Eye Syndrome. My current treatment plan includes minims artificial tears, Hyabak eyedrops, and Xailin overnight eye ointment. I also use a micellar solution called Blephasol which helps ease the discomfort on my eyelids. While my eyes still feel mostly hot and uncomfortable, the pain is at least reduced when I use these products, some of which are only available on prescription.

More recently I have introduced daily flax seed capsules into my diet, on the advice of my consultant at the Manchester Royal Eye Hospital. We are told that fish oils provide nutrients for the eyes, but I am vegetarian, so the doctor recommended flax seed capsules as an alternative. I have been taking these supplements for just over a month, and I do feel that my condition is improved during that time. I still need to pull out ingrowing eyelashes when they grow back, and I still need to use all the eye drops and ointment, but my eyes have been feeling less puffy and swollen, which can only be a good thing. I am so thankful that I have access to good quality healthcare in the form of our NHS, but I am still searching for other people that have Lymphedema Distichiasis, so that I can feel understood. My brother and father have the condition, but they are much more stoic in their response, and they struggle more with the lymphedema aspect, which I do not have. A search on the internet shows me that there have been several studies in America to explore my condition and the FOXC2 gene, but I think they are not so easy to find here in the UK. Where are you, fellow eye spoonies?

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