Scleroderma quite literally means 'hard skin' and Judy Browning was first diagnosed in 1992 when her youngest of three children was 15 months old.

"It's the gift that doesn't stop giving," she said sarcastically. "It's that kind of disease.

"When I was working as a nurse, this was a death sentence. A lot of people don't even know about scleroderma unless they know someone who has it.

"It's life-changing, I was a nurse and I couldn't work after the age of 38."

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There are two types of scleroderma; limited and diffuse. Limited scleroderma affects the skin and can sometimes restrict joint movement. Diffuse scleroderma involves a more widespread hardening of the skin and internal organs are also affected.

Although most patients are classified as having either limited or diffuse scleroderma, different people may have different symptoms or combinations of symptoms.

"I mimics lots of other things like arthritis and takes an average of six years to be diagnosed when a lot of damage is done internally," Mrs Browning said.

"First of all your hands start crippling and imagine pinching a leg of lamb, that's what our skin feels like. Fatigue is also a big part of it.

"It mostly effects women over the age of 25 and that's when you're in your peak; working and with young kiddies. It hits you when you're most productive."

Mrs Browning said up until the last couple of years only 5000 Australians had been diagnosed with scleroderma, but that number had been put up to 6000 recently.

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Along with her support group, Mrs Browning aims to raise the awareness for the autoimmune disease by fundraising for research.

"We plod along together," she said. "The commonality of purpose and being able to share what happens to us really helps each other.

"Sometimes we talk about how we've coped and we all have a dark sense of humour to keep it funny.

"We can talk openly about the icky bits and it keeps it normal. Your face changes a lot and that's your presentation to the world.

"It's a horrible disease and it can be really demeaning."

Until June 30, more than 50 iconic Australian buildings, bridges and landmarks, including Sidney Myer Place in Bendigo, will be illuminated yellow to 'Shine Like A Sunflower' in celebration of World Scleroderma Day on June 29.

Mrs Browning's support group will hold their 30^th anniversary on June 30.

"It's wonderful to shine a light on the disease," she said. "We are here, we do suffer but we are doing our best."

To find out more about scleroderma, head to the Scleroderma Australia website.

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