Group aims to support people with scleroderma
Association helps people suffering from hard-to-detect, unpredictable disease
Even with lots of family support, Tracey Magee felt alone for a long time.
She no longer feels that way. The loneliness began five years ago when the Regina woman started experiencing heavy swelling of her hands and feet, joint pain, a lack of mobility and range of motion.
Eventually, digestion issues and fatigue started taking a toll.
Magee missed a lot of work and quit running because of sore and tight joints. It took almost two years before a rheumatologist diagnosed her with scleroderma.
“The disease has so many symptoms that diagnosis is difficult,” Magee said.
“Not any one patient suffers in the same way.”
When she got the diagnosis, she was relieved. But then shock set in.
“Even though the definition of the word scleroderma is hard skin, it actually affects more than the skin in most patients,” Magee said. “It can attack the heart, lungs, esophagus and kidney. There’s no known cause and no cure.”
Scleroderma results from an overproduction and accumulation of collagen in body tissues. Complications can range from mild to severe.
Scarring of lung tissue can result in a reduced ability to breathe and reduced tolerance for exercise. When scleroderma affects the kidneys, patients can develop elevated blood pressure and, in very serious cases, kidney failure can result.
Scarring of heart tissue can increase the risk of abnormal heartbeats and congestive heart failure and severe tightening of the facial skin can make it hard to brush teeth or have them professionally cleaned.
Staying on top of the disease requires Magee to have continuous testing of her blood, lungs, heart and digestive system.
Right now, she’s doing well with medication to manage the symptoms, but the disease is unpredictable.
“We have no idea or map as to when things will affect me or where,” said the 47-year-old.
Scleroderma is a condition in which the body’s immune system attacks its own tissues. An estimated one in 2,500 Canadians is affected by the disease.
Magee wanted to learn more about scleroderma and connect with people like her so she joined the Scleroderma Association of Saskatchewan and is now the incoming president.
The support group meets twice a year and is open to patients, their families and friends. Seeing others manage the disease gives Magee hope.
“I want anyone suffering with scleroderma to know that they are not alone,” she said.
On June 4, the association plans to hold a walk at the South Leisure Centre, 170 Sunset Dr. Registration is at noon and the walk begins at 1 p.m.
The goal is to raise funds for scleroderma awareness, education and research.
“More needs to be understood about the disease in order for us to find a cure,” Magee said.