What if I told you that Venus Williams, Olympic medal winner and former world number 1, had a debilitating auto-immune disease? She may have won seven grand slams but Venus has experienced times in her life when she couldn’t lift a tennis racquet up. What is this devastating illness? It’s called Sjogren’s Syndrome (pronounced “show-grins”).
I, too, have recently been diagnosed as suffering from Sjogren’s but, up until December 2012, I had never heard of it. You probably haven’t either.
Sjogren’s is not as rare as you might expect, approximately 3-4% of adults in the UK have it but it is one of the most under diagnosed conditions despite being the second most common. The reason for this is Sjogren’s symptoms are so similar to many of the other, more well-known, auto-immune diseases like Rheumatoid Arthritis and Lupus. Like with other auto-immune conditions, Sjogren’s patients’ immune systems react abnormally, attacking healthy tissue and cells instead of viruses and bacteria that enter the body.
Symptoms can range from joint pain to dry eyes. Possibly the worst symptom, though, is the extreme fatigue. This fatigue is not something that can be cured with a long lie-in or a few naps; it is the kind of exhaustion that made me want to cry every time I woke up, no matter how long I had been asleep for. Like many other conditions, there are few outward signs and therefore people presume you’re healthy.
You could go for years, decades even, without a “flare” where the disease rears its head and makes you feel like you’re dying. I went ten years between flares but, as I have gotten older, the time between the flares has reduced and the time it takes to recover has increased. Sjogren’s can appear to go into remission but, unfortunately, it will always be lurking in the background. The problem with that is, sufferers can get into a vicious circle of worrying about the illness reappearing but stress increases the likelihood of a flare. When you’re living through a flare, it’s easy to become depressed and feel like it will never end.
Some sufferers will be “lucky” enough to only have dry eyes and/or a dry mouth to contend with but even these symptoms make everyday life difficult. It may mean that you encounter tooth decay because you are not creating enough saliva. You may also find you can’t wear contact lenses because there is simply not enough moisture in your eyes to rehydrate the lenses when you blink.
However, some other patients can see major organ involvement. Because Sjogren’s attacks the soft tissue in the body, your brain, kidneys and lungs can all be at risk. There is no cure for Sjogren’s but it can be managed with topical treatments, anti-malarial drugs and, in severe cases, immunosuppressants. There are also other services available to help you come to terms with the diagnosis and possible implications. For example, you may be sent to a Health Psychologist to discuss your feelings about the diagnosis. Perhaps you’ll see a Physiotherapist to help with mobility issues.
Venus confessed in an interview that she had been to see doctors several years before she was diagnosed and was told that they were baffled as to what could be causing her joint pain and fatigue. I was told for twenty years – since the age of nine – that I had either Chronic Fatigue or ME. I was turned away by GPs and other specialists, and some even suggested I was a hypochondriac. I was officially diagnosed in May, 2013. Since diagnosis, I have researched the condition and I am now able to connect the dots and identify that all of the previously unexplained health-related “episodes” can be attributed to Sjogren’s.
The thing with Sjogren’s is it’s so under-recognised that you have to be lucky enough to deal with someone who recognises the signs. The blood tests run by GPs won’t show anything up as the tests GPs run are very general. If you get as far as a Rheumatologist or Immunologist, you may still get turned away. You must stand your ground. My specialist told me that the only definite way to be diagnosed is to have a lip biopsy – which has to be ordered by a doctor. Having said that, I’ve spoken to lots of people who have been diagnosed without having to have the invasive surgery.
Sjogren’s common symptoms.
- Dryness of eyes, mouth, etc.
- Tooth decay.
- Dry cough.
- Difficulty, swallowing, chewing, etc.
- Hoarse voice.
- Difficulty speaking.
- Sensitivity to light.
- Itchy / burning / stinging eyes.
- Mucus in eyes.
- Dry skin.
- Exhaustion / fatigue.
- Joint / muscle pain.
- Brain fog.
Sounds fun, no? But, don’t worry, I will be writing more articles on this topic, and suggesting other blogs and books that may be helpful. If anyone would like more information or would like to run a feature on this subject, please email me at firstname.lastname@example.org