“I don’t know how to best explain coping with Sjögren’s. Try to imagine eating with virtually no saliva. When you are normal, it’s very difficult to imagine someone else experiencing a totally different life.”
Shamsee Sanguinetti is one of approximately 400,000 Canadians living with Sjögren’s syndrome, an autoimmune disease that attacks the glands that make moisture, including tears, saliva and mucous. It can cause severe dry eyes, dry mouth and swollen salivary glands, as well as inflammation of the blood vessels, lungs and joints.
Sjögren’s can also affect other organs in the body, leading to serious complications. Nine out of ten Sjögren’s patients are women and the age of diagnosis is typically between 30 to 50 years of age.
Shamsee, a mother of two and grandmother to two active grandchildren, first began noticing symptoms in 2002 that have progressed over the years.
“My severely dry mouth means I avoid foods that are not wet because my body cannot digest them,” she says. “The lack of saliva has also caused my teeth to rot and break up, and my gums are constantly sore. As bad as these visible signs are, Sjögren’s also causes profound exhaustion and fatigue, and insomnia, which can lead to depression.”
It took many years before she got the care she needed. Eventually, thanks to some Internet sleuthing by her daughter, in 2007 Shamsee visited Dr. Arthur Bookman at the Sjögren’s Clinic at Toronto Western Hospital. That was when she was officially diagnosed.
Canada’s only multidisciplinary Sjögren’s program
The Sjögren’s Clinic was established by Dr. Bookman in 1991. It is the only multidisciplinary Sjögren’s program in Canada incorporating care from rheumatologists, ophthalmologists, and ear, nose and throat doctors.
On average it takes a person four years to be accurately diagnosed. With growing awareness over the past decade, the number of diagnoses is increasing and Dr. Bookman has a full patient load, with 2-3 new patients each week, coming from across Canada.
“Because an individual experiences many symptoms that can be so varied, our Clinic is the best place to come,” says Dr. Bookman. “In one appointment, a patient can see every specialist they need.”
The concentration of clinicians and scientists at the Clinic is helping to advance groundbreaking research that is exploring the potential causes of Sjögren’s – currently believed to be genetic or due to previous exposure to virus – and improved treatment options.
Dr. Joan Wither is a world-renowned Senior Scientist focused on autoimmune rheumatic disease.
Her research and basic science background paired with Dr. Bookman’s clinical expertise make their collaboration truly unique and, with donor support, will result in improved care for Sjögren’s patients around the world.
Dr. Wither runs a clinic that can screen individuals with auto-antibodies that are known to precede the clinical onset of autoimmune diseases.
“The clinic allows us to follow these patients over time with the aim of early identification of individuals that are progressing to one of the autoimmune rheumatic diseases,” says Dr. Wither. “Most patients go through a prolonged pre-clinical phase before developing disease and earlier treatment would prevent the damage that occurs at the onset of disease.”
In June 2015, Dr. Wither was the winner of a European League Against Rheumatism Abstract Award for this groundbreaking research. Together with Dr. Bookman, they are embarking on a larger genetic study with an international collaborator focused on the patient group from her clinic.
Advances in research made here give hope to patients like Shamsee, as does the expert, compassionate care she receives from Dr. Bookman and his team.
“Dr. Bookman is the most wonderful and caring person I have ever known as a doctor,” says Shamsee. “Truly, he is the best.”