Greg Sutherland is in constant pain. There is little he can do for the chronic ache in his leg, so the 14-year-old Grade 9 student has had to learn ways to cope in order to focus on his studies and having fun.
Greg suffers from complex regional pain syndrome – a rare and poorly understood disorder believed to be result of a dysfunction in the central or peripheral nervous system, which causes an intense burning pain in extremities.
At school, he chooses to cast off the cane he uses to walk in favour of toughing it out.
“He doesn’t want to seem different,” said Greg’s father. “He’s an expert at hiding it.”
But Greg’s pain is constant, and he’s been living with it for years.
About five years ago, Greg came to his parents, Kevin Sutherland and Janet Servis, with a sore spot on his leg. As the spot grew and the pain intensified they became more concerned. They went to the hospital, but after running multiple tests, doctors had no answers.
“All they did was tell us what is wasn’t. It wasn’t lupus, it wasn’t multiple sclerosis,” said Janet. “Which is a relief, but then, you still don’t know what it is.”
The pain got worse, but with no diagnosis, doctors wanted to discharge Greg from hospital. Still desperate for an explanation, Janet and Kevin were told by a doctor that Greg’s pain wasn’t real at all – it was all in his head.
They knew their son was in agony – Greg had collapsed from the pain – but they still struggled to find a doctor who could help.
It took three years of doctors’ visits and tests before they got an answer, but it did not bring a solution. Greg’s pain has since spread to cover his whole left leg.
“It’s a warm pain, it’s like hammers,” said Greg. “It’s all the time.”
Kevin said not being believed by doctors at first was the most difficult part. Since then, it has taken time to understand Greg’s syndrome, and it has no simple solution. Kevin likens it to phantom pains, a misfiring of nerves.
“It’s like the smoke alarm is going off, but there’s no fire” said Kevin.
Janet and Kevin have struggled watching their son in constant pain. As the parents of four children, the added stress has weighed heavily on them. They have experimented with different methods of physiotherapy for Greg, some of which made things worse. With doctors at a loss, Kevin and Janet developed their own physiotherapy plan for Greg.
“We brought it to the doctors and said ‘would this work?’ and they said ‘go for it,’ ” said Kevin.
Janet and Kevin worked Greg through the excruciating exercises in their home.
“He would be screaming at me and telling me how much he hates me,” said Janet. “But I didn’t want his leg to atrophy.”
With limited solutions, Greg visited psychologists who taught him how to cope. Since his diagnosis, he does physiotherapy and hydrotherapy once a week.
Though the hydrotherapy helps Greg stay active, it’s not covered under Kevin’s health care, and it’s complicated by the fact they are a single-income home. The family gets financial assistance from the children’s charity Variety – The Children’s Charity to help offset the cost of Greg’s therapy.
“We were desperate,” said Janet. “We just started searching online asking for help anywhere.”
They found Variety, which has been providing some financial support for two years.
“We wanted him better and couldn’t afford it,” said Kevin.
It took years for the family to find supportive doctors and financial assistance for Greg. Though they are thankful to have found help, Greg’s pain continues. Though the syndrome causes Greg’s leg to become red, it generally isn’t visible. Kevin said this makes it hard to find understanding for his son’s suffering. Greg does his best to hide it, but the constant pain makes it hard to focus and distracts him at school.
Greg had to give up playing soccer – a sport that he loved – but managed to find new hobbies. Greg now does archery and is ranked third in the province. He plays the trumpet, works as the tech manager for school plays. and is involved with Gearbots, an activity that teaches kids robotic engineering.
The family is thankful for Greg’s school, which has been understanding of his condition. They are relieved to have finally found a supportive group of doctors, pain specialists, psychiatrists and physiotherapists.
But getting help for a poorly understood syndrome has been an uphill battle.
“If we didn’t advocate for our son,” said Janet, “nothing would be done.”
Greg’s treatment requires assistance from charities like Variety to provide support while they look for relief.
Variety will be hosting its 47th annual Show of Hearts Telethon to raise money for B.C. children with special needs on Feb. 16 and 17.
The telethon raises money to provide grants to children who are struggling with a variety of health issues. The telethon features taped performances by international stars, including Adele, Rihanna, Paul McCartney and Justin Bieber. Canadian superstar singer-songwriter Chantal Kreviazuk will open the telethon Saturday night with a live performance at the Red Robinson Theatre in Coquitlam.
The show will run on Global BC on Feb. 16 at 7 p.m. through Feb. 17 at 6 p.m. Call 310-KIDS or visit www.variety.bc.ca to donate.