At first, it was just a rash on his cheeks.
Like the parents of any four year old child, Kathleen and Cam Hayduk didn't think their son's rash was too serious. Doctors initially diagnosed the rash as psoriasis or eczema and prescribed basic steroid creams. As several months passed with no improvement, Sam's strength suddenly began to deteriorate. Soon he was unable to climb stairs or run more than a couple of paces due to becoming weak and listless. Kathleen and Cam worried as they saw more medical professionals for Sam.
A dermatologist was the first to suspect Sam did not have only a skin disorder and ordered blood work to investigate the possibility that Sam had something else — juvenile dermatomyositis (JDMS). JDMS is a form of juvenile arthritis, which is an autoimmune disease — Sam's small rash was an early symptom of the disease. It causes the body's immune system to malfunction and attack healthy tissue in various parts of the body, causing inflammation and damage. In dermatomyositis, muscle and skin are attacked by inflammation, but the joints, lungs, heart, and intestinal tract can also be affected. Arthritis was the disease strangling young Sam.
Once they knew arthritis was a possibility, Kathleen and Cam feverishly researched the disease to understand better what Sam would be facing. They discovered while there is no cure for JDMS, early access to aggressive treatment is the single most important factor in preventing permanent crippling damage.
One night Sam woke up, unable to swallow and was having difficulty breathing. Aware this was a symptom of his untreated disease, Kathleen and Cam phoned an ambulance and took Sam to the hospital where he was treated.
"We had no idea that arthritis could strike so young," says Sam's mother, Kathleen. "Within a week blood tests confirmed Sam had JDMS, and less than a week later he was admitted to the hospital for treatment." Sam responded very well to the medication, his muscles regained strength, a bit at a time, and his fatigue gradually began to lift. Having a better understanding of the disease helped Kathleen and Cam to be assertive about getting Sam the best treatment, right away.
"Without the swift medication and treatment Sam received in Vancouver, he probably wouldn't be walking unassisted" Kathleen recalls. Prior to modern steroid treatments, a third of children with JDMS died and a third were left severely handicapped. "We are so grateful that we live in a place where we had access to the best physicians, including dermatologists and pediatric rheumatologists. We know that if we lived somewhere else in BC-we might not have been so lucky."
Soon after his initial treatment, Kathleen and Sam completed a five kilometre run together, showing just how well Sam has responded to treatment. "He literally ran the whole way — I couldn't believe it — we are so grateful. It shows you how much is possible with the right health care."
As one of 600,000 British Columbians living with arthritis, Sam's family shared their story as part of the Where is Arthritis? tour, which is traveling the province in September in recognition of Arthritis Awareness month in Canada.