Tight skin all over the body, an exaggerated response to cold temperatures or emotional distress and acid reflux - These are just some of the symptoms suffered by more 5000 Australians currently diagnosed with scleroderma.
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The condition can also affect the function of the heart, lungs or kidneys to varying degrees.
These problems, if left untreated, can become life-threatening.
There is no known cause and no known cure for the condition at this point however, a newly formed association aims to boost awareness of the condition and raise funds for research.
It also aims to establish support groups around the country for sufferers of the condition as well as their families, friends and carers.
One family is putting their best feet forward in an effort to raise funds and awareness with 500,000 Steps for Scleroderma – a walk from Campbelltown to Ariah Park in South West NSW.
Tamara Kennedy, her husband Andrew Kennedy and father Stephen Noack are striding out for wife and mother Patricia Rainbow-Noack, 57, who was diagnosed with fast-progressing Scleroderma about 12 months ago.
The news that she had scleroderma came after several years misdiagnosis while trying to find answers to the various symptoms she suffered.
She is one of 10 people who has been selected for a medical trial that will shut down her body with chemotherapy. This is to start in June however, it poses great risks.
Mrs Kennedy said there was a high chance the trial treatment could stop her heart.
She said one in 20 people die from the treatment.
“She already has heart and organ problems and this treatment could be fatal, but the other option is three to five years of life left with horrible side effects from the condition,” she said.
“She has decided to do the trial.”
The walk is expected to take 13 days to complete setting out from Campbelltown on May 26 and arriving at Ariah Park on June 7.
Ariah Park has been chosen as the final destination for the walk as it is where Ms Rainbow-Noack spent many special times with her husband, Stephen Noack.
One of the first overnight stop offs will be at the home of Ms Rainbow-Noack’s sister, Janet Hutchinson, who lives in Colo Vale. The walkers will arrive in Colo Vale on May 27.
The stopover will also provide an opportunity to chat with anyone keen to learn more about Scleroderma or to make a donation.
About $15,000 has already be raised through 500,000 Steps for Scleroderma with Mr and Mrs Kennedy hope to push this tally to $20,000 by the time they reach Ariah Park.
To find out more about the condition, the walk and how to donate go to https://m.facebook.com/stepsforscleroderma/
