Several years ago, Marilyn Thom started running for her health. Now she runs for a group of people who can’t. A longtime employee of the School of Optometry & Vision Science (WOVS), Thom is also a dedicated volunteer with the Sjögren’s Society of Canada. She recently ran a 7K race to raise funds for the organization. But that’s only one of the ways she’s helping to fight a condition that too often goes unrecognized and untreated.
Sjögren syndrome is a chronic autoimmune disease that attacks multiple organs, creating severe dry eye disease, dry mouth and dental and oral diseases, painful joints, debilitating fatigue and many other associated diseases.
It’s the most common autoimmune disease after rheumatoid arthritis and affects an estimated 430,000 Canadians, mostly women. But because the symptoms often mimic other conditions, Sjögren sufferers wait an average of seven years before being diagnosed.
Calendars and cupcakes
Thom first became aware of Sjögren syndrome through the work of WOVS professor Dr. C. Lisa Prokopich. Dr. Prokopich specializes in dry eye and other ocular surface diseases, seeing patients in the School’s Ocular Health Clinic. She has served as the Society’s Vice President since it was founded in 2008 and encouraged Thom to join the organization’s Board of Directors.
Now Thom is involved in organizing the annual patient conference and participating in numerous fundraisers like the recent run. A former daycare provider, she enjoys creating awareness activities that are both educational and fun. She has run contests based on Sjögren facts and brought cupcakes into work to celebrate the birthday of the Swedish ophthalmologist for whom the syndrome is named. She’s also one of the dedicated volunteers (including the Centre for Sight Enhancement’s Melinda Szilva) who spent their lunch hours throughout December selling the Society’s January Blues Lotto Calendar, which supports Sjögren research.
Dr. Prokopich explains why volunteers like Thom are so important to the Sjögren’s Society of Canada.
"People with Sjögren disease have experienced the benefit of having a Canadian society. They want to help but are oftentimes quite unwell with multiple treatments for the multiple systems affected by their disease. That’s why we’re grateful for volunteers like Marilyn who step up."
“We are always looking for enthusiastic volunteers for our many activities that support our mission and mandate, including providing patient support and education, increasing professional and public awareness, and raising funds to support Canadian medical research,” she says.
“Volunteers bring many essential skills, such as accounting, fundraising, meeting planning, and grant-writing skills, to name a few, and the ability to communicate the mission of the Society to the public and to health care professionals is so important for us to enhance our outreach”.
An opportunity for optometry
There’s also a real need for people willing to set up patient support groups across Canada. With a limited budget, the Society has only been able to offer its patient conference once per year, and thus far only in Ontario, despite the mandate to support persons with Sjögren disease across Canada.
And this is where optometrists are uniquely positioned to help, Dr. Prokopich says. They are often the health professionals who first detect Sjögren syndrome in patients who present with dry eye disease. She would like to connect with optometrists who have an interest in dry eye disease and who might be willing to help grow the Society’s awareness and outreach programs and even become members of the Board of Directors.
We have the passion and a vision to improve the quality of life of persons with Sjögren syndrome and their families in Canada,” she says. “We need to find more people to help us execute it.
For more information on Sjögren syndrome, or to find out how you can help, please visit the Sjögren’s Society of Canada website.