Resources
Find out more about scleroderma in these free brochures
Scleroderma Australia produces a number of informative brochures. These explain aspects of scleroderma for medical professionals, people living with scleroderma, their families and friends.
Scleroderma – More than skin deep
June 29 is World Scleroderma Day. World Scleroderma Day was created to raise awareness of what it means to have this medical condition. June 29 is a day to recognise and understand the complexities the condition and to ensure equal treatment and equal care for people with scleroderma.
Understanding and Managing Scleroderma
This booklet is intended to help people with Scleroderma, their families, and others interested in scleroderma. It answers some of the questions most frequently asked about scleroderma.
Understanding Scleroderma and the NDIS
When you apply for the National Disability Insurance Scheme (NDIS), it is important to explain how scleroderma impacts your daily life. This brochure provides information for people with scleroderma to help apply for NDIS so you can get access to the supports and services you may need.
Raynaud's Phenomenon
Raynaud’s Phenomenon is the most common early symptom of Scleroderma. It is present at one time or another in about 90% of people with scleroderma.
Eating well – Nutritional Needs in Scleroderma
The purpose of this booklet is to assist people with nutritional concerns relating to scleroderma and to also ensure people continue to enjoy food, sometimes with dietary modifications.
Scleroderma and Oral Health
Because connective tissue occurs throughout the whole body, this condition affects many and various organs and can produce a wide range of symptoms, including oral and dental complications. This brochure discusses these problems and steps to minimise oral symptoms and damage.
Lung Function Testing and Scleroderma
People with scleroderma and the related scleroderma variant, Mixed Connective Tissue Disease are at risk of lung complications. Lung function testing is one screening tool used to help identify people at risk of developing lung conditions such as pulmonary fibrosis (scarring of the lungs) or pulmonary hypertension (higher than normal blood pressure in the lungs).
A helpful guide and resource on Scleroderma and intimacy
If you or your partner has been diagnosed with scleroderma, you may be wondering how this may affect your sex life. This is a helpful guide and resource for people with scleroderma to discuss with their doctor or partner.
An information guide to managing fatigue with scleroderma
Fatigue is a common challenge for people living with chronic conditions, including scleroderma. In fact, people with scleroderma in clinical studies have listed fatigue as one of the top 3 symptoms that bother them.
Scleroderma Australia Telehealth Pathways Nurse
The Pathways Telehealth Nurse service is an Australian innovation that places a trained registered nurse within a patient organisation, to provide specialist care and health system navigation to communities with rare, genetic, and complex conditions.
Dealing with bladder and bowel complications in Scleroderma
People with Scleroderma may experience complications with their bladder or bowel. This brochure provides information about why these issues may occur and advice on how you can get help.
Scleroderma and the Workplace
As a person with scleroderma, this guide may assist with conversations with your employer or provide knowledge, confidence and understanding of workplace adjustments, and your rights under the Disability Discrimination Act 1992.
Managing the impact of Systemic Sclerosis on the skin
Systemic sclerosis (SSc) has many potential impacts on the skin. The type and severity of the skin involvement will vary and is often related to the underlying subtype of SSc.
Morphoea - Localised Scleroderma
A sclerotic skin condition characterised by thickening/hardening (fibrosis) and inflammation of the skin. Morphoea (also known as localised scleroderma) is a sclerotic skin condition
characterised by thickening/hardening (fibrosis) and inflammation of the skin. There are many subtypes of morphoea which vary according to the location of the areas of involved skin.
Travelling with Scleroderma
This brochure aims to make your plans and travel as stress-free as possible, and also as rewarding and exciting as it should be.
Hospital checklist – a guide to nursing patients with Scleroderma
Often when a person with scleroderma is hospitalised for surgery or treatment of another condition, they find that the nursing staff may have limited knowledge of scleroderma. The following care plan was developed for a person with scleroderma to take to hospital and give to the nursing staff on admission.
Understanding NT-ProBNP
From 1 November 2023, the Government is funding an important blood test called the ‘NT-proBNP’ test for Australians living with Scleroderma, also known systemic sclerosis (SSc). The test assesses your risk of having a condition called Pulmonary Arterial Hypertension (PAH), which is more common in people with Scleroderma. Read the information below or chat to your doctor to learn more.
Hospital checklist form
Often when a person with scleroderma is hospitalised for surgery or treatment of another condition, they find that the nursing staff may have limited knowledge of scleroderma. The following care plan was developed for a person with scleroderma to take to hospital and give to the nursing staff on admission.
Helpful tips when having blood taken
Tips to help you undergo blood tests with the minimum of distress and assist the collector to understand your needs.
SPIN - Links and Resources
The Scleroderma Patient Intervention Network provides valuable resources and tools to assist people living with Scleroderma. Please see a link to some additional resources.
Questions to help you communicate with your PH healthcare team
The PAH patient charter outlines the holistic care every person living with PAH deserves. Taking a collaborative approach and working together with your Pulmonary Hypertension Medical Team and allied health is key to ensuring you receive care that is most appropriate for you.
PAH Patient Charter
We hope that this PAH Patient Charter will help you and your healthcare professionals communicate effectively with each other, make decisions together and agree on a care plan that is appropriate for you.
PH Human - Links and Resources
People with Scleroderma may also be diagnosed with Pulmonary Arterial Hypertension (PAH). Please see a link to some additional resources.