Scleroderma Research: What’s Here and What’s Coming? With Dr Hugo Stephenson

Posted on April 18th, 2024

This blog post summarises the key insights from the latest Virtual Education Session (VES) led by Dr Hugo Stephenson, an Australian doctor, specialist in medical research, and founder of several biotechnology service companies, including MediGuard and Health Research Solutions. He is also an active advocate of drug safety research and consumer health awareness. This article

Scleroderma and Fatigue: Insights from March 2024 VES

Posted on March 29th, 2024

Scleroderma and Fatigue: Insights from March 2024 VES This blog post summarises the key insights from the latest Virtual Education Session (VES) led by Dr Jessica Fairley (MBBS(Hons) FRACP), an expert in the field of Scleroderma and fatigue and an early career rheumatologist and PhD candidate in Melbourne, with a particular interest in systemic sclerosis

Self-care with Scleroderma

Posted on December 31st, 2023

People living with scleroderma, whether limited or diffuse scleroderma, deserve to feel their best. Obviously there are the important things you need to do, like seeking treatment, taking the right medication and knowing your limits, but there is also a lot you can do outside of this, allowing you to enjoy your lifestyle and feel

Understanding Oral Health Challenges in Scleroderma: Insights from Expert Tami Yap

Posted on December 18th, 2023

Scleroderma can impact oral care in many ways, so we’ve summarised our November Virtual Education Session (VES) on the topic. For more in-depth information, we recommend reading our free oral health brochure.  This session was led by Dr Tami Yap, a senior lecturer at the Melbourne Dental School with a wide range of experience with

Scleroderma Employees in the Workplace—Creating Inclusive Environments

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.

Understanding Scleroderma: An In-Depth Overview

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

Decoding Pulmonary Arterial Hypertension (PAH) in Scleroderma: Dr Zoe Brown’s Research

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

The NDIS Review Interim Report

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

Exercise and Physical Activity for People with Scleroderma: Insights from July 2023 VES

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

Scleroderma Victoria at World Scleroderma Day & Shine Bright Gala 2023

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

FAQs: Insights from VES-SPIN Meeting on Annual Tests and Patient-Centred Interventions

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

Building Resilience: An Easy Guide to Managing Life with Chronic Health Conditions

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

Highlights of February Virtual Education Session:  Scleroderma and the Skin

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.

Hidden disabilities sunflower: shining the light on non-visible disabilities

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

Annual General Meeting 2022: Here are the updates you missed

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

Scleroderma and Continence: Highlights from our November Virtual Education Session

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,

National Carers Week, Family & Friends, and Carers Payment and Allowance

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,

Scleroderma and Intimacy: Highlights from our September Virtual Education Session

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

4 Useful tips to help you manage your scleroderma fatigue symptoms

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

Australia gets ready to Shine Like A Sunflower to raise scleroderma awareness

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

Social Security and Your Rights: Highlights from our May Virtual Education Session

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

Welcome to volunteer editor Georgie Waters

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.

6 Ways To Improve Your Mental Health When Living With Scleroderma

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

Virtual Education Sessions

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

How to Leave a Lasting Legacy with a Bequest to Scleroderma Victoria

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

Third dose of COVID-19 vaccine recommended for people who are severely immunocompromised

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

Everything You Ever Wanted to Know About Scleroderma Support Groups

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

Skin, Hands & Raynaud’s: Take-aways from the Virtual Education Sessions

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