Imagine waking up one day and suddenly being unable to use your legs. That was what happened to Rain Shiu Tin-yung in Hong Kong when he was six.
“He got up that morning, but his knees hurt so much that he couldn’t walk. He was in so much pain,” Shiu’s mother, Apple Kwok Siu-ping, recalled.
The pain only worsened.
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“All his joints were inflamed. It was so painful he would wake up crying,” Kwok said. “He went from being able to walk to not walking at all.”
It took several visits to the doctors and tests before Shiu, now 20, was diagnosed with paediatric rheumatism, a broad term for more than 100 autoimmune disorders in children, where the body’s immune system mistakenly attacks healthy tissues, causing inflammation and chronic pain in joints, muscles and other areas. At the time, awareness about this rare group of diseases among doctors was still low.
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In 2005, rheumatology specialist Dr Lee Tze-leung led a group of patients, family members and other professionals to establish the Hong Kong Paediatric Rheumatism Association (HKPRA), a non-profit dedicated to raising awareness and providing mutual support for children with rheumatic diseases and their carers.