It’s a disease many Canadians may have never heard of – or are able to pronounce properly – but the impact Sjögren’s Syndrome has on the lives of those suffering from it is impossible to ignore.
Sjögren’s (pronounced ‘show-grins’) is an autoimmune disease in which the exocrine glands – those that produce saliva and tears – are attacked, resulting in, among many other symptoms, dry eyes and mouth.
Though at first glance the symptoms may not seem serious, according to one local sufferer, the impact the disease has on her daily life is “dramatic.”
White Rock’s Marilyn Mulldoon suffers from primary Sjögren’s Syndrome, meaning it is the main disease afflicting her body. Secondary, related ailments she suffers from include chronic sinisitus, vasculitus (blood vessel inflammation) and osteoarthritis in every joint in her body.
At 58, Mulldoon likens living with Sjögren’s to “trying to ski through a sandy desert with a piano strapped to your back.”
As a professional film and television actress, the disease has drastically limited the roles she is able to take. Extreme fatigue and joint pain prevent her from spending long hours on set and a sensitivity to special effects makeup also limits her acting options.
Cataracts she developed as a result of constant dry eyes means she can’t drive in the dark – something she said anyone in the TV or film industry knows is essential to accommodate long, unusual hours.
“Sjögren’s has very much affected how much I’m able to work,” Mulldoon said. “You can’t say to your agent, ‘OK, I’ll go audition for something, provided I’m not filming at night.’”
It’s not just her professional life that is affected by the disease. Any outdoor activities she wants to take part in have to be carefully thought out, as exposure to sun and wind affect her dry eyes and nasal cavity. Finishing a novel takes her months instead of days or weeks, because her eyes begin to ache after just a few minutes of reading.
Even sexual intercourse is a struggle for Sjögren’s sufferers – 90 per cent of whom are women – because of the body’s lack of ability to lubricate itself.
Sjögren’s can have much more serious implications, including an increased risk of choking, nutritional malabsorption and lymphatic or esophageal cancer.
For Mulldoon, however, the struggles she faces in her daily life pale in comparison to what she went through on the long road to being diagnosed.
It took 18 years of visiting doctors and specialists, many of whom brushed her off, before she was finally diagnosed at the age of 45.
She estimates that nowadays it takes patients anywhere from five to nine years to be diagnosed, but suspects that many sufferers are still falling through the cracks.
“So many patients go in with such a broad spectrum of symptoms, that many of them have been written off as nutjobs, people who need therapy or psychiatric evaluation,” she said. “The road for many has been humiliating to get to the day of diagnosis.
“We are invisible patients fighting an invisible disease.”
As B.C. awareness director for the Sjögren’s Society of Canada, Mulldoon is determined to raise the profile of the elusive disease – estimated to afflict 430,000 Canadians – and reach out to those suffering with symptoms. She runs the South Fraser support group, which meets in North Surrey every two months and hosts a variety of speakers who provide insight into the disease.
The society also advocates for more awareness on the national and international level, and hopes that a recent high-profile diagnosis may help their cause.
Earlier this year, tennis superstar Venus Williams withdrew from the US Open, saying she had recently been diagnosed with Sjögren’s. Though Mulldoon knows first-hand how devastating such a diagnosis can be, she said Williams’ speaking out about the disease brings potential for its heightened profile.
“As much as it grieves me to see such an incredible athlete fall victim to this, I’m hoping Miss Williams will be approached by the Sjogren’s foundation in the states,” she said. “We need the awareness. People are still being written off as psychiatric nuisances.”
Having experienced the long and frustrating process of reaching a diagnosis, Mulldoon advises those who think they may have Sjögren’s to take their health care into their own hands. A visit to the dentist is a great place to start, she said, as they are often the first to notice an unusually dry, damaged mouth.
Attending a support group is also an important step to take, she said, because sufferers are able to exchange tips on how to deal with disease, and how to bring about more awareness of it.
“Patients need to know they’re not contagious, they’re not infectious. They’re not alone, but it’s going to affect their lives dramatically.”
The next Sjögren’s support group meeting in Surrey is set for Nov. 17 – for more information, call 1-888-558-0950, email firstname.lastname@example.org or visit www.sjogrenscanada.org