Support for those living with scleroderma

A SUPPORT group for locals living with scleroderma has extended an open invitation for new members to join.

The group meets for lunch and a catch-up every six weeks at various venues around the Bendigo area.

Scleroderma is a rare chronic connective tissue disease that causes the skin to harden and tighten. There are different types, including localised, which only affects the skin, and systemic which can affect internal organs.

It is more common in women than men, and people from southern Europe, America and Australia, and is most often diagnosed in people between the ages of 20 and 50, but can affect people of any age.

Group member Ian Grenda said an issue he struggles with the most is the effects of low temperatures.

“I can’t stand the cold,” he said. “The heat, I’m not great at that either, but the cold really affects me.

“My hands go numb, they go black and blue and red, and they hurt, so doing anything is (difficult).”

About 6000 people currently live with scleroderma in Australia. Mr Grenda said new members to the group would be enthusiastically welcomed.

“There’s people out there that sit at home and they don’t even know there’s (this) group, that there’s someone they can talk to about their problem who can understand them,” he said.

“It’s a very unusual thing and there’s not many of us out there.

“You think you’re the only one in the whole world that’s got it. No, you’re not. You’re not alone, that’s the thing.

“There has to be others out there, sitting alone, who don’t understand that there is somewhere to go.

“There’s people here that do understand.”

Interested parties are encouraged to contact group leader Frances Collins via [email protected] or on 0407 858 147.