September is Arthritis Awareness Month and a number of North Shore residents who are affected by the disease are doing their part to raise awareness of the realities of a diagnosis as well as the steps that can be taken to improve quality of life for patients and their families.
West Vancouver's Sheila Kerr is one of two North Shore residents who sit on the Arthritis Patient Advisory Board, a group of patients who work with researchers at Arthritis Research Canada (ARC), a Lower Mainland-based centre that conducts consumer-driven clinical research and trials related to arthritis prevention, diagnosis, prognosis and living well. Kerr serves as a co-chair of ARC's patient advisory board. Joining her as a member is fellow West Vancouver resident Linda Hirukawa. "It's absolutely fascinating what we do. We are patients who interact with researchers on a regular basis to inform their research," says Kerr. Serving as a board member affords those living with the disease an opportunity to get involved in arthritis research from the inception of a research idea through to the dissemination of results.
"Getting patients actively involved in research can provide valuable insights into the issues that matter to us. It may be changing the methodology, changing which outcomes are measured, or getting the results out to the public in a more timely and understandable way. We are fortunate that there is a culture of inclusiveness and respect for meaningful patient engagement in research at ARC. ARC was an early adaptor of this idea (in 2001) and I believe they are leaders in the field. By working together with the researchers, patients hope to better improve the lives of the many people living with arthritis," says Kerr.
Kerr, now 60, was diagnosed with osteoarthritis when she was in her 40s. She has been involved with the Arthritis Patient Advisory Board since 2011.
"It is immensely stimulating to interact with the researchers who are passionate about what they do and who work hard to make a difference in our lives. I have benefitted personally by being exposed to research which can inform me how to manage my disease based on the best available research evidence. Of course, there is always the satisfaction of volunteering in an area you feel passionate about," she says. As part of their work, the board runs an annual public forum entitled Reaching Out with Arthritis Research (ROAR). This year's edition, ROAR 2015, marks the 11th and is being presented Saturday, Oct. 3 at the central branch of the Vancouver Public Library from 9:15 a.m. to 12:30 p.m. "We want to fill that gap between research and getting the word out to people with arthritis," says Kerr. "Although there's no cure, there are ways that you can manage your disease to live better in the future," she adds.
This year's theme is Osteoarthritis and You-What you can do now!, and researchers will address a variety of topics, including early diagnosis and management, slowing the progression of the disease, as well as a discussion of joint replacements, which, according to Kerr, are becoming increasingly common in people under 60.
"The main reason is to try to prevent or delay osteoarthritis. And to that end we want to inform the public that there are things that you can do early on even before osteoarthritis is seen on an X-ray," she says.
ROAR 2015 speakers will include Cheryl Koehn, Dr. Jolanda Cibere, Dr. Michael Hunt, Judit Takacs, Dr. Deborah Marshall and Dr. Nelson Greidanus.
While this year's forum theme speaks to osteoarthritis, the most common type of arthritis, arthritis patients of all types are encouraged to attend, as well as health care professionals, researchers and community members at large.
Those unable to attend are encouraged to participate via a free live webcast. A Tweet Chat will also be held.
North Vancouver's Tamara Komuniecki, 43, was diagnosed with severe juvenile rheumatoid arthritis when she was six-years-old.
This month, she has partnered with The Arthritis Society and is sharing her story in hopes it inspires those sharing her diagnosis, encouraging them to stay positive and continue to dream big.
The Edgemont Village resident was previously involved with The Arthritis Society going back 15 years when she had been living in Edmonton, serving as a leader in its Arthritis Self-Management Program. "It's been my goal for just about my entire adult life to spread the word," she says. While she's gone through a bit of a "quiet period" in recent years, she's "ready to be loud again."
Komuniecki took a break from arthritis advocacy for a few years related to the birth of her son, Finn, age 5, and the result of changing careers. The former successful national broadcast and print journalist is currently working as an entrepreneur, serving as the owner of Delish General Store (delishgeneralstore.com). Delish started as an online magazine before evolving into an online store and now has a physical location offering a variety of curated and created sundries and wares on Granville Island. She hopes to eventually expand into Edgemont Village. "I now have a second successful career, my first career was as a long-time journalist and I had some incredible opportunities and experiences. And so I did a lot of speaking tours to kids in schools, to medical students, to doctor's conventions -kind of anybody who would listen. And now I continue to be struggling with this disease. I've been getting joints replaced now. I almost feel like I have a second experience with it as a very active disease because all of my joints that have had the disease in them for so long are failing now, so now I get this second kind of wave of it where I have to replace all those joints," she says.
According to The Arthritis Society, more than 4.6 million Canadians (one in six aged 15 and older) are believed to have the disease, which can impact people at any point in their life, and of any physical condition or ethnic background. Main symptoms include chronic joint pain, stiffness and swelling.
Despite the constant impact of the disease on Komuniecki's day-to-day life, the result of chronic pain, multiple previous and pending joint replacements as well as related surgeries, and debilitating inflammatory attacks, the busy wife, mother and entrepreneur refuses to let the disease slow her down. "I think that people who live with pain can either succumb to it, to yield to it, and feel powerless against it, but I've always taken it the other way," she says.
While she of course remains sensitive to her body and avoids causing unnecessary damage by pushing herself too hard, "in terms of positivity and energy, I am someone who is the eternal optimist, I'm eternally energetic. I'm hungry and thirsty for experiences and adventures and so I just kind of keep going. I always think that I could have it worse. My arthritis is not something that will be fatal, hopefully, and it's manageable and I still have my brain and I still have the love of my family. So whatever else is thrown at me, it's OK because I'm still here and I'm still learning and living," she says.
Komuniecki hopes to continue finding opportunities to be a spokesperson for arthritis patients.
"I just feel like being vocal is what I do. I feel like I can speak from the pulpit with great experience. It's always been a great passion of mine to be a role model and inspiration for kids newly diagnosed or living with this painful disease because so many of them probably think it's a life sentence for being sedentary and having pain and not having any adventure or career accomplishments but it doesn't have to be that way at all," she says.
For information on Arthritis Research Canada, including participating in research, making a donation or on ROAR 2015, including to register ($5), visit arthritisresearch.ca. For more information on The Arthritis Society of B.C., visit arthritis.ca.
