It’s a potentially serious disease that can take a person out of the workforce, leave them socially isolated and shorten their life, but scleroderma is still not commonly known and sufferers usually go years without a diagnosis.
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Next week, a Bendigo support group will host an event to mark World Scleroderma Day, to raise awareness of the condition and bring together people who live with it.
Organiser Judy Browning said the June 27 event would feature a talk from nutritionist Samantha Gemmell on how people could keep up their nutrition and avoid foods that inflamed their condition.
Mrs Browning said the group wanted to find others with the illness for support.
“(We want to) give a glimmer of hope, because it is a pretty devastating disease,” she said.
Scleroderma is an autoimmune disease that affects the body’s connective tissues: the tissues that support joints, muscles, skin and internal organs.
Severity and symptoms can vary between people, but they can include Raynaud’s phenomenon, a condition restricting blood flow to the extremities; reflux and indigestion; thickening and hardening of the skin; stiffness and pain in the muscles and joints; damage to the lungs, kidneys and heart; and fatigue, among others.
For some, it can be life-threatening.
Mrs Browning said it could take people out of the workforce and affect their social lives, leaving sufferers feeling isolated.
The inability to work, she said, also had an impact on a person’s financial situation.
About 5000 people live with scleroderma in Australia, and women are three to four times more likely to suffer the disease than men.
Mrs Browning said many GPs would go their entire careers without seeing a case of the disease.
On average, she said, it took about five years for a person to be diagnosed; for her, it took seven to eight years, and she saw numerous doctors.
There is no cure for the condition, but treatment aims to manage the symptoms.
Mrs Browning also said when caught in the early years, therapy could help halt its progress.
She said sufferers in this region were fortunate to have two scleroderma services at Monash and St Vincent’s hospitals in Melbourne.
Next week’s talk is supported by a grant from the City of Greater Bendigo.
The event will be held at the Marong Family Hotel on Wednesday, June 27 from 11am.
To RSVP, contact Mrs Browning on 0419 885 894 or at judybrowning2@bigpond.com by June 22.
World Scleroderma Day is marked on June 29, the anniversary of the 1940 death of celebrated artist Paul Klee from the disease.