A Mount Annan family plans to walk more than 500 000 steps for charity, to raise funds – and awareness – for a little known condition called scleroderma.

NSW mum Trish Noack was diagnosed with the disease in 2016, which hardens the skin and can have a fatal impact on internal organs. She has lost a lot of mobility, making tasks like brushing her teeth extremely difficult. Her family have rallied around in support, committing to a charity walk from Mt Annan to the town of Ariah Park from May 26 – June 7. So far they have raised almost $8000 of their $20 000 total, with proceeds going to Scleroderma Australia.

The invisible illness: What is scleroderma?

Scleroderma – also known as systemic sclerosis – is a chronic connective tissue disease that falls under the umbrella of autoimmune rheumatic diseases. One of the primary symptoms is the thickening of the skin or hardening of the skin, which can cause can cause serious damage to internal organs including the lungs, heart, kidneys, esophagus, and gastrointestinal tract.

Scleroderma can affect a number of different parts of the body, and is often referred to as a multi-system disease. Serious cases of scleroderma can be life threatening, and is three to four times more prevalent in women. This rare skin condition is not contagious or infectious, and it is not malignant. Depending on the severity, treatment involves medication, physiotherapy and surgery, but as yet there is no known cure.

Scleroderma Australia: Raising funds and raising awareness

Scleroderma Australia was established to promote awareness of this little known condition, educating people via their website and organising an annual campaign to shine a spotlight on this otherwise invisible illness. Putting their money where their mouth is, the association also funds research into scleroderma and advocates for patients via a series of state-based support groups.

A large part of awareness raising centres takes place on June 29, internationally recognised as World Scleroderma Day. Last year’s successful social media campaign encouraged people to upload photos and videos to Facebook, Instagram and Twitter with the hashtag #ScleroSmile. Not just about education, the day aims to help overcome loneliness by bringing people with scleroderma together.

You can join Scleroderma Australia and the Kennedy family in their fight against this devastating condition. For more information, visit http://www.sclerodermaaustralia.com.au or you can donate at give.everydayhero.com/au/500-000-steps-for-scleroderma.