Cork women tell of life with Sjogren’s Disease

WHEN neuroscientist and author of Beating Brain Fog, Dr Sabina Brennan was diagnosed with Sjogren’s Disease in 2008, it was after a relatively long time trying to establish why she felt so unwell.

With symptoms including fatigue, coughing a lot at night-time, pain in her arms and legs, dry eyes and brain fog, she was eventually diagnosed with the autoimmune disease that affects mostly women and is almost as common as rheumatoid arthritis but is under-diagnosed.

Having been told by a doctor she had borderline lupus, another doctor carried out a whole autoimmune screening of her.

She was sent to a rheumatologist who thought she had Sjogren’s Disease, but in order to get a definitive diagnosis, Sabina was told she’d have to undergo a lip biopsy.

Initially resistant to such a test because of possible side effects associated from it, including nerve damage, Sabina eventually decided to go ahead with the biopsy. It confirmed what the rheumatologist suspected.

“With Sjogren’s Disease, the moisture glands are attacked,” she said. “The biopsy showed that my saliva glands were being damaged. The guy who carried out the biopsy damaged the nerve in my lip. Sometimes, I have a slight dribble.”

But Sabina says lip biopsies are no longer carried out and “diagnosis is now much more simple”.

There is no cure for Sjogren’s Disease but Sabina, who is doing well, says it’s important to take on medical advice about how to live with it.

“Managing stress is absolutely critical. There are ways you can do that. I think remembering to have fun is important. That sounds odd but I had a lot of work-related stress in my life. Schedule fun for yourself at some point every day. Laughter is a great stress buster.

“Also, prioritising sleep is absolutely crucial. If you have trouble sleeping at night, consider napping during the day.

“Physical exercise is important but it can be challenging for people with Sjogren’s Disease. I was that soldier when I couldn’t move and had to start off just walking 20ft and working it up to 5k or 6k. Exercise benefits your brain and you body.”

Sabina says someone with Sjogren’s Disease may have fibromyalgia, a painful condition which causes tenderness all over the body. “Some people argue that fibromyalgia is distinct from Sjogren’s disease.”

Eating healthily is vital. “These things genuinely make a difference. I know when I go off the rails, I tend to have a flare. You should listen to your body to get back on track.”

Dr Eleanor O’Sullivan, a retired lecturer and oral surgeon at Cork University Dental School and Hospital was diagnosed with Sjogren’s Disease about 15 years ago. She says it is often considered as an “add-on where it’s associated with another disease, usually arthritis”.

Aged 63, Eleanor has had arthritis since her early twenties. But she doesn’t downplay Sjogren’s Disease, despite the tendency of medics to skate over it in consultations. She says doctors often focus on dry eyes and recommend various eye drops. However, the quality of life implications associated with Sjogrens are challenging. And there are implications for oral and optical health.

Eleanor has come across a woman with dry eyes who had to quit working because of the impact of it. This woman often has to pull into a lay-by and stop the car to apply eye drops.

“I have dry eyes and dry mouth which is exacerbated by taking other medication,” says Eleanor. She points out we take saliva for granted. “If you have a lack of saliva, it impacts on your ability to eat. You need saliva to break down food and it helps you to chew, swallow and taste food.

“People with dry mouth often end up losing the enjoyment of eating - which is a huge part of life. Dry mouth can lead to conditions such as thrush which is very uncomfortable and nasty. If a person with Sjogren’s Disease has their natural teeth, it increases the rate of decay. Your teeth can decay along the neck where they go into the gum and a tooth can snap off.”

It’s important to let your dentist know if you suffer from dry mouth. “Dentists have a lot of expertise and can give people special toothpaste, mouthwash and advice on how to look after the condition.”

As Eleanor says, a simple antidote to dry mouth is sugar-free chewing gum. “In relation to quality of life, people need to look at the type of food they’re eating and stay away from extremely dry food like dry biscuits, dry crackers and dry bread.”

Eleanor recommends eating soups, casseroles and other moist foods. “They’re easier to chew and swallow and are more flavoursome.”

While a diagnosis of Sjogren’s Disease means learning how to live with it, Eleanor says a sufferer should seek help. “A lot of people accept that oral and eye discomfort is a natural part of ageing. But it’s important to let medical people know you’re experiencing these issues. The quality of life issues associated with the disease are not appreciated or given much significance.”

About 18 months ago, a group of people with Sjogren’s Disease formed a support group called Sjogren’s Ireland. Since then, the group has teamed up with immunology researchers at RCSI (Royal College of Surgeons in Ireland).

A joint group, Sjogren’s Research Ireland, has produced resources for patients and medical workers such as webinars, a podcast, a booklet and a website.

The group has been shortlisted for an Irish Healthcare Award in December in the category of Patient Organisation Project of the Year.

www.sjogrensresearch-ireland.eu