People who say lightning doesn’t strike twice haven’t met the Junkin family. Despite the fact that there is no history of arthritis in their family, two of the Junkin’s three children have been diagnosed with juvenile arthritis (JA). “It was a shock – one my parents are still dealing with,” says Lindsay, the younger daughter, who was diagnosed at two-and-a-half.
Her sister Shannon, who is five years older than her, was diagnosed at age 15. “When Shannon was diagnosed, it gave me my greatest ally,” says Lindsay. “We were always close, but since then there has been another level of understanding between us.”
Although they have the same disease, their experiences have been quite different. Shannon’s arthritis has been relatively manageable, primarily affecting her knees, while Lindsay’s is more severe; she has been on medication every day since her diagnosis, and the arthritis has flared almost everywhere in her body, from her jaw to her ankles. “The arthritis itself can be overwhelming, but she has also had to deal with a lot of other underlying complications,” says Lindsay’s mom Debbie, including iritis – an inflammation of the eye that can cause blindness – glaucoma, cataracts, a drooping eyelid, a deformed jaw and disintegrated cartilage in her ankle, all of which required surgery.
At 16, though, her arthritis hit hardest; for three months she was couch-bound, unable to walk, go to school, or even eat. “Every joint in my body was flared,” she says. “Even eating was too painful. I got down to 78 pounds.” At that point, the support of her family became a lifeline. “Everyone in my family had a role in helping me: my brother (Aaron) would bring my homework home from school, my sister would tutor me, my dad (Darrell) would carry me up and down the stairs, my mom would bathe me. That’s what got me through it – being part of a family and knowing how much they loved me.” For mom Debbie, sibling involvement was key. “Many times I felt that I have not paid enough attention to the other two, but Lindsay’s illness has just been part of our life. Shannon and Aaron understand that. They have an empathy and a better understanding of illness.”
Debbie and Darrell, who live in Peterborough, Ont., have also instilled in their kids a commitment to community service. “We have always done volunteer work, and now our kids do it too.” Lindsay volunteers once a week at The Arthritis Society in Toronto, where she is now a student at Ryerson University. “Having a voice as a representative for the arthritis community makes me feel like there is a reason this happened,” she says. “It gives meaning to every bad experience I’ve ever had.” And being away from her family? “Coming to university was the first time I had been away from my support system, so that made me a bit nervous. It was hard, but I knew I was ready,” says Lindsay. “And a good phone plan goes a long way.”
WHAT IT IS: Juvenile arthritis (also called chronic childhood arthritis or juvenile rheumatoid arthritis) is defined as continuous inflammation of one or more joints lasting at least six weeks for which no other cause can be found. One in 1,000 Canadian children live with JA.
SIGNS AND SYMPTOMS: Joint inflammation, possibly stiff joints upon waking, walking with a limp, difficulty using arms or legs, though these symptoms are not always apparent because pain is not always a feature. Children with arthritis do not always complain of pain. JA can be difficult to detect and may sometimes go unrecognized by even the most experienced physician.
TREATMENT: Anti-inflammatory medications to reduce swelling and make exercise therapy more effective and minimize permanent joint damage.
CAUSE: Unknown, but thought to be related to immune system irregularities.
LONG-TERM IMPACT: Severe inflammation can sometimes slow growth, inflammation can occur inside the eye and reduce vision, unpredictable ‘flares’ when the arthritis seems to worsen can be difficult and painful to manage. —Adapted from The Arthritis Society website, www.arthritis.ca
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