World Sjogren's Day

Today is World Sjogren’s Day. Dr. Henrik Sjögren was a Swedish ophthalmologist who first identified the disease in 1933. Today, his birthday is celebrated as World Sjögren's Day to help raise awareness for this disease.

Dr. Sjögren met a patient who complained of dry eye, dry mouth and joint pain. While each of these symptoms were already well known, it was the combination of them that Dr. Sjögren noticed and decided to investigate. He could have been just an ophthalmologist who treated the symptoms but his open mind led him to the discovery of an unknown disease.

It was my eye specialist at Cheltenham General who sent me for a blood test in August 2017 and discovered I have this auto immune disease. I had seen several specialists for my dry eyes prior to this point in my life but Mr T realised it was more than just dry eyes. I was told my body had turned against my tear and saliva glands and that inflammation of joints and tiredness were also possible symptoms.

As those of you who have followed me since then will know, I had got to the stage of putting drops in my eyes 50 times a day before I had two procedures in 2020/21 to cauterise my eye drains. Now one eye still has a drop about once an hour but the other eye only has a drop first thing (and overflows sometimes during the day). I also bathe them three times a day and use a special drop at night ( cyclosporin) which reduces inflammation. Both eyes are still sensitive to dry air and smoke and I am more prone to infection that other people, but life is much easier than it was 5 years ago.

I also have to drink a lot of water while I eat and wherever possible have sauces on food to make it easier to eat. Small portions are necessary (when  you lack saliva it also impacts digestion) but I love my food and still eat (more or less) what I want to eat.

I am extremely grateful for a very understanding husband and friends. Rob puts up with the house a couple of degrees cooler than he would like in the winter as he knows the dry air of central heating causes me a problem. He also suffers from dry eyes but can’t really complain about it in front of me! My friends know I need wet food and no candles and preferably not an open fire.

I’ve had to learn to listen to my body. I still work but always have a day between clients. I limit my computer time to avoid my eyes getting too tired. I always carry eye drops and water and think about the environment into which I am going and what I might need to make my stay there more comfortable.

Everyone’s symptoms vary. The impact on my eyes has been worse than many others, but some Sjogren’s patients cannot get out of bed some days, luckily that’s not me. If you have dry eyes and a dry mouth it’s worth mentioning Sjogrens to your doctor so they can test for it, there’s not a cure but there are products to ease the symptoms and there are support groups and sometimes it just helps to name the pain. Thank you for taking the time to read this.
(Quinnie's eye in the picture!)