There are several questions that we get asked a lot – one is how do you pronounce ‘Sjogren’s’, and the other is ‘what is Sjogren’s’? Let’s answer the easy question first – SHOW-GRINS – named after the Swedish ophthalmologist who first identified the condition in 1933, when he met a patient who complained of dry eye, dry mouth and joint pain. Sound familiar?
In essence the condition is caused by the immune system damaging healthy parts of the body – in particular the fluid producing areas, hence the dry eyes and dry mouth. But other areas of the body can also be affected, including the joints and nerves. And it is the dry eyes and dry mouth that are the most common symptoms of this disorder.
It’s not entirely clear why the immune system stops working properly but it could be based on genetics, or hormones. But there can be a connection to other conditions such as lupus or rheumatoid arthritis.
In the UK it is estimated 0.5 million people have ben diagnosed with Sjogren’s, but the true number could be higher as a lot of people go undiagnosed.
Most people are over 40 by the time they are diagnosed with Sjogren’s and it tends to be more common in women. The impact it can have really varies from person to person, ranging from a little bit of a nuisance to something that has a big impact on every day living.
How do you know if you have Sjogren’s syndrome?
Whilst dry eyes and dry mouth are probably the most common symptoms, there are others that may or may not be experienced, including:
- Dry skin
- Vaginal dryness
- Muscle or joint pain
- Prolonged tiredness
- A persistent dry cough
It’s important to make an appointment to see your GP if you are suffering from symptoms that could indicate Sjogren’s, so they can rule out other potential causes, and arrange specialist tests if necessary. These might include a blood test, lip biopsy and an eye examination.
What can you do about it?
Sadly Sjogren’s is a long-term condition, which is unlikely to get better on its own, so management of the symptoms should be the focus [and your GP can advise on the best options available to you].
When it comes to dry mouth it’s important to maintain your oral hygiene – and that means brushing and cleaning your teeth and mouth thoroughly.
Because you have less saliva, food debris and bacteria can accumulate, leading to oral thrush, increased tooth decay and gum disease. So it’s important to brush your teeth twice a day for two minutes using a fluoride toothpaste.
Oralieve Ultra Mild toothpaste will effectively clean and protect your teeth and mouth, but because it is specially for people with a dry mouth, it won’t irritate it as it is so mild in flavour. We’ve also removed the Sodium Lauryl Sulfate [SLS] that is present in many toothpastes -it’s the foaming ingredient – because SLS can dry the mouth and lead to ulceration.
But what about the dryness – what can you do about that?
Dry mouth can be really uncomfortable if you have Sjogren’s. It can make swallowing and talking painful or difficult. It can leave you with bad breath. It can also make it harder for your lipstick to stay in place! [honestly!]
There are products you can use to help with dry mouth, such as Oralieve Moisturising Mouth Spray or Gel, which replicate the action of natural saliva to leave your mouth more comfortable and healthier.
Your GP might prescribe you Pilocarpine, to help increase the fluid production of your glands, or other potential drugs to help.
But most importantly it’s useful to speak to other people who also have been diagnosed with Sjogren’s – they can support you through the diagnosis stage and share their experiences, which might be useful!
Contact the British Sjogren’s Sufferers Association for more information https://www.bssa.uk.net/.