Scleroderma Australia holds events throughout the year. Our events include seminars, social gatherings and support groups.
Trish Rainbow-Noack knew something was seriously wrong when the skin on her hands started peeling off "like bricks".
She was initially told she had lupus, then told she didn't. "I was so frustrated that these changes were happening, I thought I was a hypochondriac," Ms Rainbow-Noack said. "Walking, everything I did, it was so hard. I couldn't clean my teeth without having to sit down.
We say goodbye Wingecarribee Council and hello Goulburn Mulwaree Council!!!
A FAMILY will strap on their joggers and walk more than 450km from Mt Annan to central NSW this year to raise awareness and funds for a largely overlooked auto-immune disease called scleroderma.
Mt Annan’s Trish Noack was diagnosed with the disease, which results in the hardening of a person’s skin, last year. In severe cases, such as in Mrs Noack’s, it also affects the function of internal organs.
Mrs Noack’s husband Stephen along with her daughter and son-in law, Tamara and Andrew Kennedy, will make the more than 500,000-step journey from Mt Annan to the town of Ariah Park from May 26-June 7.
Mrs Noack, who is undergoing treatment, has lost mobility as a result of the disease, forcing everyday tasks such as brushing her teeth to be extremely difficult.
But Mrs Kennedy said family, friends and even strangers had been extremely supportive.
“People with scleroderma have gotten in touch with us and said they often feel like they’re battling it alone,” she said.
“With this we’re able to spread awareness and fight this battle together.”
More than $3000 has been raised so far. The family is aiming to raise $20,000 in total.
“To everyone who has donated, I’d like to say a big thank you. You’ve really lifted my mum’s spirits,” Mrs Kennedy said.
“There is no cure and so it’s so important that we help Scleroderma Australia with their research.”
To donate, visit give.everydayhero.com/au/500-000-steps-for-scleroderma.
Events and Seminars will be posted on this page four weeks prior to the date.
We have many support groups throughout Australia.
Support groups are organizations of people who share a common disorder, in our case systemic sclerosis, also known as scleroderma, and who meet together to discuss their experiences, share ideas, and provide emotional support for one another. Unlike formal group therapy, self-help support groups are usually not led by a professional therapist but nevertheless can be a helpful coping tool to complement formal treatment. By coming together to share a coffee and a chat much can be achieved by meeting others who experience similar health and mental issues.
Probably the biggest advantage of support groups is helping a patient realize that he or she is not alone - that there are other people who have the same problems. This is often a revelation and a huge relief to the person. Being in a support group can also help you develop new skills to relate to others. In addition, the members of the group who have the same problems can support each other and may suggest new ways of dealing with a particular problem.
Support Groups
NEW SOUTH WALES
Blue Mountains and Mudgee - Blue Mountains and Emu Plains
Mudgee District
Central West Scleroderma Group (Orange)
Coffs Harbour
Illawarra
Port Macquarie and Mid-North Coast
North West Scleroderma Support Group (Tamworth)
Byron Bay/Ballina/Lismore
Sydney Central
For more information regarding the above groups contact phone 02 9798 7351
New South Wales and ACT - Autoimmune Resource & Research Centre
(02 4921 4095) or or www.autoimmune.org.au
VICTORIA
Bendigo
Mornington/Westernport
Western Suburbs
Seymour
Ballarat
Albury/Wodonga
South Eastern Suburbs
North Eastern Suburbs
Inner South Eastern
TASMANIA
Hobart Sally
North West Coast
For more information regarding these groups contact www.sclerodermavictoria.com.au or phone 03 9288 3651
QUEENSLAND
Brisbane
Sunshine Coast Gold Coast Social Group
Toowoomba
Mackay
Rockhampton
Townsville
Hypertension Support Group Prince Charles Hospital 11am-12pm. 1st Thurs in Month Ph: 07 3139 5788
SOUTH AUSTRALIA
Arthritis South Australia,118 Richmond Road, Marleston SA 5033
Contact: Katrina, Telephone: 08 8379 5711 Email:
