From 1980 membership of the Support Society grew and it became obvious that many people with these diseases had unmet needs. Funding was raised through the Warners Bay Lions Club and the NSW/ACT Public Health Care Foundation to develop a Scleroderma/Lupus Resource Centre. The Centre was established in 1989 to provide a support service for people with connective tissue diseases.
These diseases are common in our community. Contrary to textbook descriptions, few patients progress to major organ failure, or death. Traditionally, many of these conditions have been seen as chronic diseases for which little can be done, leaving patients with the impression that they have a rare and untreatable disease. The Centre, which is staffed by a Nurse/ Educator (Margot Paterson), Counsellor (Sally Gulliver) and Executive Assistant (Janine Furner), who strive to reverse this image by providing:
- Education for people with these conditions and for their families
- Face-to-face patient education
- A telephone information service
- An educational resource for allied health professionals
- Information on the impact of these conditions on members of our local community.
Scleroderma, Lupus, Sjogren's Syndrome, and Raynaud's Phenomenon are little known conditions. In the past, it has been very difficult for those diagnosed with these disorders to obtain accurate information and support.
Margot, Sally and Janine can be contacted at the address given below or e-mailed at:
ARRC@hnehealth.nsw.gov.au
Autoimmune Resource Centre Level 2
Hunter Area Pathology Service Building
John Hunter HospitalLocked Bag 1HRMC NSW 2310
Telephone: +61 2 49214095 Fax: +61 2 49855347 *** ( View map of John Hunter Hospital by clicking on the following link JHH_RNC_map_updated_Jan_07.pdf) *** To assist with the continuation of this free service please send donations to the:
Scleroderma/Lupus Support Society
PO Box 373
Warners Bay 2282
Reg. Charity No. CFN 11496
If you are between the ages of 18 and 85 years old and have been diagnosed with an Autoimmune Illness. ARRC would like to invite you to help our researchers unlock the mysteries of Autoimmune illnesses such as Lupus, Scleroderma, CREST, Sjogrens, Raynauds, Vasculitis, Thyroid illness & Coeliac Disease.
ARRC is developing an electronic database of names and contact information of people living with autoimmune illness that would like to participate in research projects run out of ARRC. The database will contain contact information, along with basic medical & standard research information regarding lifestyle factors such as smoking, drinking and exercise.
These research studies could lead to discoveries that can improve the diagnosis, treatment and management of your illness or the illness of someone close to you.
We would like you to help us investigate autoimmune illness
If you are interested in participating in our Research Database and would like to receive an information pack
please contact the:
ARRC Resource & Research Centre
And leave your name and address
on
4921 4095