Living a life not an illness

1:20 people live with an autoimmune illness with 1:1000 people living with lupus, scleroderma and other systemic autoimmune diseases. Prevalence is significantly higher in the female population and within indigenous communities. Autoimmune diseases in our community are increasing and unfortunately health and support services are not keeping in line with community and patient needs. ARRC’s programs bridge the service gap and aim to reduce the impact of chronic autoimmune disease on the individual and community by maintaining a balance between health care management systems for symptoms and educating the individual and their community about chronic autoimmunity and living well with autoimmunity. Our education resources and programs focus upon building capacity of individuals to actively change daily activities to reduce illness impacts through improved knowledge and better management skills.

Systemic autoimmune illnesses, including lupus, scleroderma, Sjögren’s and Raynaud’s, have a wide number of symptoms that can range from mild to severe. Symptoms vary across diseases and also within diseases. Autoimmune diseases are complex, multifaceted and difficult to diagnose, manage and understand. All are chronic in nature and can significantly impact on an individual’s general health, mental health and quality of life. Many Autoimmune disease patients, due to illness symptoms and consequent long term organ damage, experience a reduced life potential. ARRC helps people to understand their disease and symptoms, and supports patients to make positive active changes to improve their health and life management. Self-management has been shown to reduce hospitalisations and direct health interventions as well as reduce frequency and severity of symptom exacerbations.

Education programs that focus on companion self-management of symptoms with practical and affordable strategies reduce illness discomfort and allow the individual to reclaim control of their life. Many impacts are a direct result of inadequate or non-existent explanation of symptoms, disease processes and importantly strategies that can be undertaken to support wellbeing in the autoimmune patient. ARRC provide services that support people living with these diseases to live a full life with illness, accommodating and managing symptoms, and learning self-management techniques that ease disease burden leading to improved overall health, quality of life and life potential.

The Centre offers access to a range of clinically-applied research, screening and therapy initiatives. ARRC aims to develop and continues to undertake studies that are of a high quality and have the potential for tangible returns to people living with autoimmune disease through improved illness management and up-to-date evidence based health information and education programs.

An integral part of our research program is that project outcomes often inform us of the most useful direction to focus future ARRC services and research directions. An example of this is the EDOLF study, which identified that there was an unmet patient need for specialised psychological and cognitive improvement support and nutritional needs. This led to the introduction of our psychology service and targeted research projects. Research findings have also informed clinical management reinforcing the vital component research has in the fight to better understand disease processes and management. ARRC is actively working towards this goal.

An important function of ARRC is to increase public awareness of wide spectrum of autoimmune diseases and their life burden. Given their impact upon community health, autoimmune diseases do not receive the attention they deserve. Through specific awareness campaigns, media, public and corporate presentations, and through seeking a greater funding of health care programs, ARRC is able to raise the profile of these diseases and the health needs of the individual autoimmune person. Awareness also enables ARRC to have an active role in countering web-based disinformation including some alarmist information about poor survival rates. In addition, by being an active advocate for autoimmune diseases ARRC is able to lobby for specific resources dedicated to autoimmune disease chronic disease management programs, improved treatments and research.

Our centre aims to bring equality into health service access for people with chronic diseases of an autoimmune nature by bridging current service and support gaps. It does this by:

1. Addressing the current health and social disadvantage autoimmune patients currently experience,
2. Engaging with other local service providers, community nurses, allied health and other support organisations to build resources, and importantly service networks so that patients’ and their families have a greater capacity to find services and access appropriate support.

ARRC and its services are financed by donations, fundraisers, and specific grants from philanthropic foundations and community arms of corporations. Despite sitting with in a hospital precinct ARRC does not receive any Government sponsorship or funding. We do receive “In Kind” support from Pathology North in the form of our Resource Centre rooms and infrastructures of which we are eternally grateful. The location of ARRC on a hospital precinct provides the benefit of being able to access and network with specialty departments of medicine and allied health to provide the best support for those in need.

ARRC is an incorporated charity Not for Profit Charity with Deductible Gift recipient status, and like many charities that do amazing work supporting research and people living with illness we need to source funds to continue to meet the needs of our often forgotten autoimmune community. If you can help us to continue to build bridges and stop many falling through the service cracks please contact us.