The story of Catherine Green
I was diagnosed with distichiasis as a baby but only after my mum fought doctors to have me checked over. The official diagnosis only came when my brother was born and he presented the same symptoms. As children we both had surgeries to remove ingrowing eyelashes regularly, and then it seemed to improve during our teen years.
I began to struggle again as I reached adulthood and was subsequently diagnosed with associated severe Dry Eye Syndrome. My brother has experienced lymphedema but so far I am unaffected at the age of 40. I had genetic tests before getting pregnant and discovered that I carry the FOXC2 gene.
My eyes have always been the problem. I am light sensitive, I recently began using autologous eyedrops, for which I donate blood every 3-4 months, I use a variety of eye care products to help me cope, and I am always conscious of my surroundings and the weather that can affect my symptoms.
I live with a constant feeling of something in my eyes, sometimes that can be sharp pains, sometimes a dull ache, always a heaviness about my eyelids and a feeling of tiredness. I am now on a medicine trial taking Nortriptyline tablets to treat suspected corneal neuralgia. Since meeting a new doctor in 2020 I am now having annual ECG and ECHO tests to make sure my heart is healthy, which apparently I should have had all along but my previous medical care was not thorough enough. All this has been through the NHS.