JointHealth
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In this issue
Listening to you Arthritis Consumer Experts (ACE)
JointHealth™ insight  Published May 2014


Women and arthritis are strongly linked: Two out of three living with the disease are women; sixty percent of Canada's medical students are women, and they will become doctors providing care to women with arthritis; women have led a number of significant advances in clinical arthritis research in Canada.

In this issue of JointHealth™ monthly, Arthritis Consumer Experts (ACE) is proud to profile three women who "rock" the arthritis world.



ACE has met many amazing mothers who live with arthritis. This year at the Canadian Rheumatology Association's Annual Meeting, ACE spoke with Dr. Janis McCaffrey, a general practitioner and mother living with lupus who shared her journey.



Q: What has been your experience living with lupus?

A: I was diagnosed with Lupus at 50 with acute renal failure due to nephritis. I was critically ill and my mother came out to help (it's supposed to be the other way around!). I could not work. Lupus 'retired' me and forced me to give away my practice with more than 2000 patients. After I got off the 'big' meds, I had a giant identity crisis and became depressed. How could I suddenly NOT be a doctor? I needed counselling and, thankfully, took and remain on an antidepressant.

To manage my lupus I began a treatment pathway that includes getting deliberate and regular exercise (yoga and tennis for me, but I started with walking!), and having quiet time to consciously set goals. If I can, I read, play chess and many word and number games for my brain. I paint and draw and garden for my psyche. I also have my own book with questions, test results and current medications list to ensure I am prescribed the right medications and maintain good communication with my doctors.

Q: How can caregivers, family, and friends support women living with arthritis?

A: Throw down your calling cards. You'd do it for any of your family and friends, right? My book group and other friends and neighbours rotated a meal to our family as they saw we needed. Extra help with childcare, driving, shopping, ironing, yard work, and handyman chores were appreciated. A friend's ear is still the best therapy in the world.

Teach your kids to be independent in age appropriate ways: to clean their rooms, do their laundry, take the bus, make their lunches, share household chores. Thank, play with, and treat them regularly.

Partners need to be intimately honest (relationship-wise, sexually, emotionally) and figure out together what to do and what will work. Be brave, and get some help if you need it.

Q: Do you consider yourself a role model?

A: Physicians I learned from were role models whether they wanted to be or not. I think a position of influence always presents an opportunity of being a role model. We act accordingly: professional, inherently teaching to whoever is listening, often the patient, their family, staff, colleagues, and we are always learning from others if we have our eyes and ears open!



Dr. Linda Li is an Associate Professor, Harold Robinson/Arthritis Society Chair in Arthritic Diseases, and Canada Research Chair in Patient-Oriented Knowledge Translation at the Department of Physical Therapy at the University of British Columbia (UBC). She is also a Senior Scientist at the Arthritis Research Centre of Canada (ARC), and a recipient of several major awards, including the American College of Rheumatology Health Professional New Investigator Award, the Canadian Institutes of Health Research New Investigator Award, and the Michael Smith Foundation for Health Research Scholar Award. Her work has led to significant improvements for people living with arthritis in Canada.



Q: What special projects are you leading?

A: My research team is developing a patient decision aid called ANSWER-2 (Animated, Self-serve, Web-based Research) to assist people with rheumatoid arthritis (RA) make informed decisions about using biologics. ANSWER-2 is the second in a series of online decision aids for RA patients. The first – ANSWER – supports RA patients to make informed choices about using methotrexate and can be found at http://answer.arccanada.org/.

Focusing on physical activity is also important because we know it can reduce pain, improve mobility, and enhance quality of life. My team recently discovered that it is feasible for RA patients to wear a physical activity tracker for an extended period. A range of studies is ongoing to learn more about the role that these interactive tools could play in helping patients be more active. The Arthritis Care in the Digital Age study aims to understand how the latest physical activity trackers can help to manage arthritis from the perspectives of patients and doctors. The Osteoarthritis Physical Activity & Exercise Net (OPEN) study is testing if arthritis patients' physical activity improves when they use this new website to set safe exercise goals. If digital tools are found to be effective in supporting people with arthritis to be active, they could lead to improvements in health. Anyone interested in getting involved can visit our website at arthritis.rehab.med.ubc.ca.

Q: Can you comment on balancing work and family life?

A: Achieving balance between roles at work and at home can be difficult. It may help to structure your day so that you can minimize how much arthritis symptoms interfere. Everyone has busy schedules, so I think it's important to build downtime into your week—listen to your body to avoid overdoing things and making fatigue worse. Taking things as they come is also a great way to relieve stress and conserve energy.

Q: How can we get more women interested in studying the science of bones, joints, and muscle??

A: It may help to increase the engagement level from a young age—by encouraging girls, for instance, to participate in activities such as science fairs and competitions. By taking part in these activities, girls may develop a better understanding of what careers in the science of bones, joints, and muscles look like. Providing educational and professional opportunities for girls is as important as building the confidence they need to pursue them.

Q: Do you consider yourself a role model?

A: I'm fortunate to have had the support of excellent role models and mentors who have supported my growth throughout my career, and I continue to learn from the examples of success they set. In my supervisory roles at UBC and ARC, I believe it's crucial to nurture students in ways that help them to get to where they want to be in their professional lives. I think the best role models help us to realize the possibilities within ourselves.



ACE was pleased to talk with Dr. Julia Alleyne, a Family Physician with a focus on sports and exercise medicine. She is the Medical Lead Outpatient Musculoskeletal Services at the Toronto Rehabilitation Institute at the University Health Network.

Dr. Alleyne is Past President of the Canadian Academy of Sport Medicine and was honoured by the Canadian Association for the Advancement of Women in Sport and Physical Activity as a recipient of the Most Influential Women in Sport and Physical Activity List.



Q: Can you tell us your involvement as Chief Medical Officer for Team Canada at the 2012 Summer Olympics in London, U.K. and Chief Medical Officer for the 2015 Pan AM/Parapan AM Games??

A: For the 2012 Summer Olympics, I worked with 65 health and science specialist from Team Canada to organize training and medical care for competition related injuries and illnesses. My work with the 2015 Pan AM/Parapan AM Games began in 2011. I will be overseeing all the athletes from around the world and am in charge of planning for host medical, rehabilitation, family practice, diagnostic, imaging, and ambulatory services, emergency care, and anti-doping procedures.

Q: Are athletes who participate in certain sports at a higher risk of developing arthritis? Which sports should people pay special attention to?

A: There are two sides to the story—that is, whether sports are the cause of injuries or the cure for injuries. It is important to note that certain joints are under more stress with repetitive movement and trauma. A sports-related injury is usually due to a combination of over usage of the joints and physical trauma. You should consult your doctor to ensure you get proper treatment for your sports injuries and to ensure a well-balanced training program can be formulated according to your unique condition.

Q: What are the best ways to prevent injuries that can potentially lead to arthritis in sports?

A: You should have an exercise plan that strengthens your lower extremities—that is, your hip, knee, ankle joints, and bones of the thigh, leg, and foot. Mastering proprioception can also help. Proprioception means one's individual perception (or sense) about where body parts are in relation to one another, and how much strength and effort is being put into a movement. In sports medicine, it is defined as the ability to maintain balance while remaining in motion. Stretching and appropriate pain management, such as heat, ice, or positioning, can also help prevent injuries.

Q: What sports do you recommend for people with arthritis?

A: Any sports that involve both upper and lower extremities are good for people with arthritis. Sports with low impact on the joints such as water aerobics, aqua fitness, hiking, swimming, and golfing can be beneficial to someone living with arthritis.

Q: How can we get more women interested in studying the science of bones, joints, and muscle?

The field of physiotherapy is predominantly women while orthopedics are mostly men. We need women representation in each medical field to encourage more women to be interested in those fields. Women should be more involved with sports early on, as interest and commitment to sports from an early age can lead to an interest in studying the science of bones, joints, and muscle. As an athlete, you may be more keen to understand how your body works. It also helps to practice what you preach.



Is your company one of
Canada's Best Workplaces for
Employees Living with Arthritis?

Successful organizations are paying more attention to the needs of employees living with arthritis. Recognizing the significant role 4.6 million Canadians living with arthritis have in the work force and economy, ACE is conducting a nationwide search for Canada's Best Workplaces for Employees Living with Arthritis.

Companies with their head office or principal place of business in Canada may apply for Canada's Best Workplace for Employees Living with Arthritis program. Companies of any size may apply, whether private or public sector. ACE will evaluate companies based on four arthritis best practice criteria: Physical Workplace, Health Benefits, Employee Education, and Organizational Benefits.

Employers or employees can submit a single application for the 2014 Canada's Best Workplace for Employees Living with Arthritis program. The deadline for application is 5:00 p.m. EST on August 15, 2014. Winners will be announced during Arthritis Awareness Month in Canada in September 2014.

Listening to you

We hope you find this information of use. Please tell us what you think by writing to us or emailing us at info@jointhealth.org. Through your ongoing and active participation, ACE can make its work more relevant to all Canadians living with arthritis.

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Arthritis Consumer Experts (ACE)

Who We Are

Arthritis Consumer Experts (ACE) provides research-based education, advocacy training, advocacy leadership and information to Canadians with arthritis. We help empower people living with all forms of arthritis to take control of their disease and to take action in healthcare and research decision making. ACE activities are guided by its members and led by people with arthritis, leading medical professionals and the ACE Advisory Board. To learn more about ACE, visit: www.jointhealth.org

Acknowledgements

Over the past 12 months, ACE received unrestricted grants-in-aid from: AbbVie Corporation, Amgen Canada, Arthritis Research Centre of Canada, BIOTECanada, Bristol-Myers Squibb Canada, Canadian Institutes of Health Research, the Canadian Rheumatology Research Consortium, Celgene Inc., GlaxoSmithKline, Hoffman-La Roche Canada Ltd., Janssen Inc., Pfizer Canada, Purdue Pharma L.P., Takeda Canada Inc., and the University of British Columbia. ACE also receives unsolicited donations from its community members (people with arthritis) across Canada.

ACE thanks these private and public organizations and individuals.

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