Shine Like a Sunflower
Will you help us SHINE A LIGHT
on scleroderma in June 2023?
Some 6,000 people across Australia are living with scleroderma right now. This rare chronic connective tissue condition shortens life expectancy by more than 20 years and can be life-threatening. There’s currently no cure for scleroderma.
This June is World Scleroderma Month and Scleroderma Australia is bringing a golden glow to more than 110 iconic locations across Australia. Find one near you and help us continue to support and advocate for people living with scleroderma, improve treatments and keep searching for a cure.
With your generous help, our goal is to raise $150,000 to fund a scleroderma nurse. We all know that the right medical support at the right time can make an enormous difference to recovery, and our scleroderma nurses do just that!
Here’s how you can join the fun and deliver improved lives to people with scleroderma!
29th June 2023
110 locations across Australia
Check out the list below to find an iconic location near you and see it #ShineLikeASunflower in support of scleroderma awareness and research.
How you can help
Donate to help improve lives
We rely on our generous supporters, like you, to continue our important work. Your donation helps people living with scleroderma and their families, and funds research to understand and develop treatments for scleroderma.
Donate through PayPal
Get the facts
What is Scleroderma?
Scleroderma – or systemic sclerosis – is a chronic connective tissue condition. It’s generally classified as an autoimmune rheumatic condition. One common symptom is the thickening or hardening of the skin. It comes from the Greek: sclero = hard, derma = skin.
Scleroderma shortens life expectancy by more than 20 years and can be life-threatening. Some 6,000 people live with the condition in Australia, and women are seven times more likely to develop scleroderma than men.
There’s currently no cure.
#ShineLikeASunflower 2022 Highlights
Over 110 iconic Australian buildings, bridges, stadiums, trees, and landmarks were illuminated in YELLOW to “Shine Like A Sunflower” in celebration of World Scleroderma Day 2022.
We extend our heartfelt gratitude to all the companies, organisations, and individuals who supported Scleroderma Australia, helping us raise crucial funds for research and awareness. Your support is immensely valued!
We are thrilled to announce our 2023 Shine Like A Sunflower campaign launch, and we would be delighted to have you on board! If you are ready to join us in shining a light on Scleroderma Australia this year, please email us at president@sclerodermaaustralia.com.au.
VIC
QLD
WA
TAS
NSW
NT
ACT
Tara's Story
Scleroderma presents unique challenges
People with rare diseases like scleroderma face unique challenges. They may struggle to get an accurate diagnosis and access to effective treatments, and in the case of scleroderma, people may have never heard of the condition before they’re diagnosed with it.
There’s not as much support out there for people with rare diseases compared to more common conditions. This can leave people with rare diseases feeling helpless, anxious and alone.
Many GPs don’t know much about scleroderma, which can lead to further feelings of isolation and hopelessness. This lack of knowledge can also impede treatment, leading to increased pain and discomfort.
We’re raising $150,000 to fund a specialist scleroderma nurse
To help combat this lack of knowledge and support, Scleroderma Australia is hoping to raise $150,000 to fund a specialist nurse who will help support and advise people living with scleroderma in Australia.
Scleroderma nurses provide information, referrals, and clinical assistance, including wound management and advice on dressings. Specialist wound care skills are a crucial part of the clinical role and include debridement and infection management – a specialism that is increasingly difficult to access in the community.
Our scleroderma nurses are available via phone and video call so people with scleroderma can call for advice and guidance on topics like wound care, diet, vaccination, chronic illness, disability, and navigating Australia’s health system.
How a Scleroderma Nurse helped Tara with scleroderma
Tara’s journey with scleroderma started when she began experiencing sore fingers while playing the clarinet, followed by foot pain. Despite being initially chalked up to post-illness fatigue, her condition didn’t improve, and she was subsequently diagnosed with scleroderma.
Living with scleroderma drastically affected Tara’s life. Simple everyday tasks became a challenge due to pain from standing for more than 10 minutes and contractures in her hand joints. To manage her energy levels, she had to carefully pace her tasks and rest after physically demanding activities.
Sadly, due to ulcerations on her arms, she had to stop working clinically and later teaching, eventually relying on a disability pension. Despite these hardships, Tara found a way to give back through volunteer work with Scleroderma Queensland and Scleroderma Australia.
The unpredictability of each day was the most challenging aspect of living with scleroderma for Tara. The pain and energy levels varied from day to day, and despite losing two fingers to the disease, she often found herself having to justify her disability access. Tara missed playing music, and while she was suggested to try different instruments, she remained steadfast in her identity as a reed player.
As a nurse herself, Tara emphasised the necessity of a specialist scleroderma nurse. She felt that while she could navigate the system, many others might struggle. She believed this role could offer valuable support for patients, caregivers, and healthcare providers, providing information, advice, and advocacy about their care.
Will you help us fund a specialist scleroderma nurse?
Here’s everything you need to help spread awareness
on your social media channels!
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