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arthritis is so much more than just a few aches and pains
7 minute read
individuals with severe arthritis experience difficulties completing everyday tasks. supplied
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when rachel gehue was referred to a pediatric rheumatologist, she was already experiencing pain and swelling in her ankles. the symptoms that first appeared after having her spleen removed seem to resolve without treatment, but weeks later, returned. she was eventually diagnosed with juvenile idiopathic arthritis, an autoimmune disease that affects less than one per cent of her peers.
gehue, now 26, is one of six million people who currently live with one of the 100 types of arthritis, with osteoarthritis being the most diagnosed in canada. it affects roughly 20 per cent of the population and one in five canadians have the disease — females appear to be at slightly higher risk for the disease than males. arthritis presents as joint pain, swelling and stiffness and it has no cure. while pain and flareups may be managed with medication, diet and non-traditional treatment interventions, arthritis can have a profound impact on someone’s life, according to the arthritis society.
individuals with severe arthritis experience difficulties completing everyday tasks. mobility issues may hinder their independence and finding and maintaining employment could be challenging. these significant losses can impact mental health and lead to everything from anxiety and mood disorders to sleep disturbances.
prior to the diagnosis, gehue was involved in hockey, soccer and volleyball, but by the end of grade 9, sports were off the table. she says that being forced to stop life as an athlete took quite a while to accept, and what was most challenging for her was having to sit in gym class while watching her peers take part in sports and physical activity.
“i expected to go about my life with just a little bit more pain than someone else,” says gehue. “but when the things you loved doing disappear, you go through a bit of an identity crisis — you don’t know who you’re supposed to be.”
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gehue’s symptoms worsened during high school — to the extent that she could no longer use her right arm — making everyday tasks, such as making her bed, brushing her teeth or doing her hair impossible. in 2015, her left elbow became unusable and locked at 90 degrees for which she underwent arthroplasty, a procedure that’s used to restore joint function.
since being diagnosed, she has had fusions on both of her wrists — a procedure that joins the bones in wrists and alleviates pain, as well as talonavicular fusion, an operation that fuses the middle part of the foot and helps to restore its motion. more recently, she had splints made for some of the fingers on both of her hands to help correct swan neck deformity. over the years, gehue has had many flareups, some which were severe enough to land her in the er and in hospital for days.
the arthritis currently affects the joints in her jaw, shoulders, elbows, wrists, fingers, knees and ankles, and the treatment protocol includes everything from anti-inflammatories, steroids, pain medication, vitamins and biologics — powerful drugs that are supposed to help slow down the inflammation. she tried seven different biologics before finding one that suited her.
rachel gehue says that she never expected for arthritis to impact her life to the extent that it has. supplied
the journey to finding a treatment can be long and painful
according to dr. siân bevan, the arthritis society’s chief science officer, the journey to finding a treatment that works can be long and painful.
“if someone doesn’t respond to the first few drugs that are prescribed, it could take years to find a treatment that does work,” she says. “and even once an effective medication is identified, many drugs have side effects, such as nausea and headaches.”
evidence suggests that once appropriate treatment is found, an individualized exercise program can benefit those with rheumatoid arthritis and osteoarthritis. bevan says while exercise may seem counterintuitive, building and maintaining muscle strength and stability is important. lower-impact activities, such as walking, swimming or yoga are recommended — while the best way to manage pain may be with topical creams or acetaminophen.
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“the goal is to prevent further degeneration of the joints while managing the pain,” advises bevan. “for many people with osteoarthritis, joint replacement surgery is the final treatment option, but it can be difficult to access with surgical wait times reaching years in some areas.”
bevan says that research is underway that is focused on identifying inequalities in access to arthritis care in canada and determining how to remove those barriers, and more studies are on the horizon. researchers are trying to better understand the links between gut bacteria and the inflammation seen in arthritis, which could inform new ways of managing the disease with diet or other treatments. there is also a large canadian study that is looking into the impact of different active cannabis ingredients on osteoarthritis, which could help guide personalized medicine.
bevan says that investments in research, such as those made by the arthritis society — the largest charitable funder of arthritis research in canada — can help to improve quality of life and could lead to better treatments and a cure.
“the goal is to one day extinguish the fire of arthritis for good,” she says.
by 2040, half of the population in canada will be affected by arthritis — that’s 30 per cent more than the number of people who live with it now. it’s a number that has the arthritis society’s president and ceo trish barbato calling attention to the misconceptions of the disease itself — that only seniors are affected, and that arthritis is just simple aches and pains — when in fact, it is complex autoimmune disease that anyone can be diagnosed with, including children and people of all ages.
“we need to have increased awareness and understanding,” she says. “people don’t realize that arthritis affects a large cohort of people in their working years, and they don’t appreciate how it can impact someone’s quality of life, how long they can work and their productivity at work.”
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barbato says that in addition to raising awareness about the seriousness of the disease through its grassroots campaigns, the arthritis society lobbies all levels of government to help reduce surgical joint replacement wait times across the country. the organization also supports canadians — even those living in remote communities — in gaining access to critical education, resources and support services. she says that most people with arthritis are shocked by the diagnosis and in addition to support, they need time to accept and navigate the life-changing disease.
rachel gehue’s arthritis currently affects the joints in her jaw, shoulders, elbows, wrists, fingers, knees and ankles. supplied
that is why making progress on all fronts is so important, according to barbato, including funding innovation, keeping arthritis on the radar of science and research, and attracting entrepreneurs.
“i want entrepreneurs to know that there are problems to be solved in this space,” she says. “we want to increase participation of so many people, including the young bright minds in college and university who might have ideas of how to help those impacted by arthritis.”
in april, for the first time in history, the arthritis society handed out ideator awards and $50,000 to each of the four individuals whose ideas have the potential to support people with arthritis in a meaningful way. the winners will use the funds to further develop their ideas: an app-based program for self-care, symptom and disease tracking, insoles that use smart technology to help those with knee and hip osteoarthritis, a diagnostic tool for knee osteoarthritis, and an assistive device for people with limited hand mobility.
for gehue, it’s hard to plan for the future. she is working on an undergraduate degree in biochemistry, but is reluctant to think beyond what’s in front of her right now — she says that she never expected for arthritis to impact her life to the extent that it has.
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as someone who was diagnosed as a child, gehue says that not being able to readily connect with peers who were also living with arthritis was challenging. and while she reached out to the arthritis society for support and is thankful that they were there for her, she says the way in which the health-care system addresses the challenges of living with arthritis can be improved: managing the medical aspects of the disease is one thing, but what’s not being considered is how isolating living with arthritis can be for young people. luckily, technology is helping to bridge that gap.
“what’s missing in the healthcare system is that our life outside the clinic is not entirely thought of,” says gehue.” “but with social media, you can find other young people who are living with arthritis.”
young canadians living with arthritis can connect with rachel, follow her journey and learn from her experience on instagram at @rachelwithrheumatoid. for more information about arthritis, resources and support, visit the arthritis society.
maja begovic is a toronto-based writer.
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