Posted on
November 15th, 2023
This blog post summarises the key insights from the latest Virtual Education Session (VES) led by Fay Calderone, who was invited to speak at the session in October 2023. Fay Calderone is a partner at Hall & Wilcox and a highly experienced employment law specialist with a 20-year track record representing employers across diverse industries.
Continue reading scleroderma employees in the workplace—creating inclusive environments
Posted on
September 29th, 2023
Scleroderma Scleroderma is multifaceted, manifesting in a spectrum of symptoms that vary across individuals. At its core, the disease is characterised by inflammation, vascular issues, and fibrosis. These manifestations can translate to symptoms like tightening of the skin, ulcers on digits, and various internal complications. Research methodologies globally Research on Scleroderma has diverse methodologies across the
Continue reading understanding scleroderma: an in-depth overview
Posted on
September 11th, 2023
Pulmonary arterial hypertension (PAH) is a complex and often misunderstood condition that disproportionately impacts those with systemic sclerosis (scleroderma). Dr Zoe Brown, a researcher at the forefront of PAH and systemic sclerosis, is aiming to change the way we diagnose and treat this life-altering condition. Funded by Janssen Australia and working in close collaboration with
Continue reading decoding pulmonary arterial hypertension (pah) in scleroderma: dr zoe brown’s research
Posted on
August 18th, 2023
The NDIS Review has released its interim report, outlining five issues that the Review and community input have identified as key challenges to the sustainability of the NDIS and the experience of participants. After ten years of the NDIS, the organisation is undertaking this review to identify what is working and what is not, and
Continue reading the ndis review interim report
Posted on
July 24th, 2023
The July 2023 Virtual Education Session (VES) focused on the impact of exercise and physical activity for people living with Systemic Sclerosis (SSc) or Scleroderma. Our key presenter, Dr Stephanie Frade, a respected exercise physiologist from Immune Exercise Physiology, and research manager from the Rheumatology Department at Liverpool Hospital, emphasised the transformational beneficial effects of
Continue reading exercise and physical activity for people with scleroderma: insights from july 2023 ves
Posted on
June 30th, 2023
World Scleroderma Day 2023 On June 29, we marked World Scleroderma Day. This significant event was spearheaded by Scleroderma Australia, with our Scleroderma Victoria community also playing a key role, in raising awareness, funds, and advocating research for this rare disease. Our collective efforts to light up the nation’s landmarks outdid all past attempts, with
Continue reading scleroderma victoria at world scleroderma day & shine bright gala 2023
Posted on
May 2nd, 2023
Here are the frequently asked questions (FAQs) that were answered and discussed during the VES – Scleroderma Patient-centred Intervention Network (SPIN) meeting held on 13th May 2023. The May 2023 Virtual Education Session, led by Dr. Brett Thombs, focused on the importance of annual tests for individuals with scleroderma and the work being done by
Continue reading faqs: insights from ves-spin meeting on annual tests and patient-centred interventions
Posted on
April 2nd, 2023
Living with a persistent health issue can be difficult. Managing symptoms, undergoing treatment, and keeping up a positive spirit can sometimes be quite daunting. Yet, resilience and determination can guide those with chronic health problems towards a more balanced and gratifying life. In this guide, we will discuss chronic illnesses and emphasise the importance of
Continue reading building resilience: an easy guide to managing life with chronic health conditions
Posted on
March 31st, 2023
An important part of living successfully with a chronic condition is learning to advocate for your needs. Some people are more comfortable doing this than others. You should feel free to ask a friend or family member to work with you as you learn to become your own self-advocate. Help is not a dirty four-letter
Continue reading overcoming the stigma of asking for help: becoming your own advocate
Posted on
February 28th, 2023
In our February Virtual Education session, we were joined again by dermatologist A/Prof Amanda Saracino. She shared her valuable experience and learnings on scleroderma and skin. Here’s a recap of what happened during this month’s session. Morphea vs Systemic Sclerosis One of the hallmarks of scleroderma is the thickening or hardening of the skin.
Continue reading highlights of february virtual education session: scleroderma and the skin
Posted on
January 31st, 2023
Individuals living with disabilities often require extra support for day-to-day tasks, but if their disability is not visible, it can be difficult to spot. Thankfully, there exists a fantastic initiative – the Hidden Disabilities Sunflower – which is designed to make non-visible disabilities more visible and make it easier for those affected to access the
Continue reading hidden disabilities sunflower: shining the light on non-visible disabilities
Posted on
December 16th, 2022
As the challenges of Covid-19 continued throughout 2022, our Committee continued to put their best foot forward to ensure our community of people with scleroderma was supported and engaged. This financial year 2021-22 was yet another challenging year for the community and we’re so proud of what we’ve achieved this year. At our AGM, we
Continue reading annual general meeting 2022: here are the updates you missed
Posted on
November 24th, 2022
People with scleroderma often develop abnormalities at any level of the digestive and gastrointestinal tract and despite the best efforts in self-care, urinary or faecal incontinence or constipation may occur. In our November Virtual Education, our guest speaker, Janie Thompson, National Continence Helpline Manager and Nurse Continence Specialist of Continence Foundation of Australia, discussed continence,
Continue reading scleroderma and continence: highlights from our november virtual education session
Posted on
October 20th, 2022
National Carers Week This week (Sunday 16–Saturday 22 October) is National Carers Week, and it’s an opportunity to recognise, celebrate, and raise awareness among all Australians about the diversity of Australia’s 2.65 million carers and their caring roles. National Carers Week is in its 30th year, and this week we acknowledge the important, often challenging,
Continue reading national carers week, family & friends, and carers payment and allowance
Posted on
September 21st, 2022
The September Virtual Education Session, Scleroderma and Intimacy, covered an important topic that is often overlooked or avoided. Our guest speaker was Chantelle Otten, a Melbourne-based Psycho-Sexologist passionate about empowering people to feel great about their sexuality. She hopes that by normalising talk about sex, pleasure and relationships, we break down barriers, and these important
Continue reading scleroderma and intimacy: highlights from our september virtual education session
Posted on
August 26th, 2022
Fatigue is a common issue for people living with scleroderma. It’s one of the top three symptoms that bothers people living with scleroderma. What is fatigue? People describe fatigue as feeling tired, mentally exhausted, or physically overwhelmed day after day, no matter how much sleep they’ve had or what they’ve been doing, even if it’s
Continue reading 4 useful tips to help you manage your scleroderma fatigue symptoms
Posted on
June 20th, 2022
This June, for World Scleroderma Month 2022, Scleroderma Australia is shining a golden light across Australia to help raise awareness of scleroderma. Australia is lighting up again! Throughout June, iconic buildings and landmarks across Australia will be bathed in a golden glow to celebrate World Scleroderma month and help Scleroderma Australia raise awareness through their
Continue reading australia gets ready to shine like a sunflower to raise scleroderma awareness
Posted on
June 2nd, 2022
Our May Virtual Education Session covered ‘Social Security and Your Rights’. We were fortunate to have guest speaker Elizabeth Divers (Liz), a community lawyer from Social Security Rights Victoria (SSRV). SSRV is an independent state-wide community legal centre that specialises in social security and related law, policy and procedure. SSRV provides free legal services to
Continue reading social security and your rights: highlights from our may virtual education session
Posted on
May 10th, 2022
Scleroderma Victoria welcomes a new editor to its committee We are thrilled that Georgie Waters has joined the Scleroderma Committee as our newsletter editor. Georgie loves to write, and has a background in linguistics with a Bachelor of Speech, Language and Hearing. Georgie is passionate about increasing public awareness of under-represented health conditions, particularly scleroderma.
Continue reading welcome to volunteer editor georgie waters
Posted on
March 28th, 2022
In our February Virtual Education Session, guest Speaker Dr Brett Thombs joined us to talk about ‘Scleroderma and Mental Health’. He discussed what we know about the impact rare diseases can have on mental health, how the pandemic affected people with scleroderma, and everyday ways to improve mental health. SPIN – Helping people live
Continue reading 6 ways to improve your mental health when living with scleroderma
Posted on
February 19th, 2022
Covid may have impacted our social lives, but it allowed the virtual world to enter our homes easily and conveniently. We responded to this new reality by going virtual. Knowledge is power, and here at Scleroderma Victoria, we want you to have all the knowledge you need to be empowered and informed. Through these Virtual
Continue reading virtual education sessions
Posted on
January 14th, 2022
At Scleroderma Victoria, our aim is to support people with scleroderma through support groups, educational talks, research fundraising, and much more. This is all made possible by the generous support of people with scleroderma, their family and friends, and the wider community. In fact, we at Scleroderma Victoria rely on generosity to do what we
Continue reading how to leave a lasting legacy with a bequest to scleroderma victoria
Posted on
December 2nd, 2021
The financial year of 2020-2021 was another challenging year for the scleroderma community and beyond. But, despite the pandemic and lockdowns, we at Scleroderma Victoria had more than enough achievement to be proud of. We spent our Annual General Meeting reflecting on some of the highs and lows of the year and wrapping
Continue reading missed the annual general meeting? here’s a wrap up
Posted on
November 7th, 2021
So you’re interested in raising money for a good cause — fantastic. Your efforts will be appreciated and will make a great difference in the community. When it comes to fundraising for scleroderma causes, we have a few guidelines and tips to help. Here’s how you can team up with us at Scleroderma Victoria to
Continue reading how to run a scleroderma fundraiser and become a sunflower hero
Posted on
October 18th, 2021
A third dose of COVID-19 vaccine has been recommended for people who are severely immunocompromised. The recommendation comes from the Australian Technical Advisory Group on Immunsations (ATAGI), which advises the Australian Government on immunisations. Because scleroderma is a condition that affects immunity, scleroderma patients may be among those who are eligible to get the third
Continue reading third dose of covid-19 vaccine recommended for people who are severely immunocompromised
Posted on
September 27th, 2021
Been to Our Virtual Education Sessions? Tell Us Why or Why not Have you always wanted to come to a Virtual Education Session and never had the time? Perhaps you never found the topics relevant, or you’ve never even heard of these sessions before now. Whatever the case may be, we want to know! Share
Continue reading feedback wanted! scleroderma virtual education sessions
Posted on
July 20th, 2021
Our Scleroderma support groups are invaluable to many of our Scleroderma Victoria members. But if you’ve never been to a support group before, you might be wondering what actually goes on in one. In this Q&A, we answer some common questions about Scleroderma support groups to help you decide whether you want to join. What
Continue reading everything you ever wanted to know about scleroderma support groups
Posted on
April 26th, 2021
Our Virtual Education Sessions are a great way to get support with the day-to-day of scleroderma and to connect with us here at Scleroderma Victoria. Always insightful, these sessions run on the second Saturday of every month. In October, we discussed skin, hands, and Raynaud’s phenomenon. In case you missed it, or just need a
Continue reading skin, hands & raynaud’s: take-aways from the virtual education sessions
