Here are some Australian and International resources that has helped me understand more about managing this condition or connect with support groups:
A
- Provide some good resources on various conditions which affect muscle and joint health.
- Have yet to use their services but ever since their re-branding, the website looks more informative and a few education and services are quite interesting to try! Check if you are nearby and able to access it.
Autoimmune Resource & Research Centre
- Based in John Hunter Hospital Campus in New Lambton Heights NSW. Provides a lot of written resources, newsletters. If you are lucky enough to live nearby, they have a lot of activities such as exercises as well as health education presentations!!!
Australian Rheumatology Association
- Learn more about what a Rheumatologist does and find one in your area.
J
- Excellent and extensive resources, especially if you are newly diagnosed. US based.
L
- I wish I knew about this book when I was first diagnosed. But never mind… at least I found him… still saving up to get the hard copy. But his advice and explanations on Lupus care and management are very good!!! Follow on Facebook if you can’t yet purchase the book.
- Very well established Lupus Organisation based in Washington DC. But, they have very good articles that has helped me understand more about lupus and also helped me learn more about the emotional and social challenges and how to overcome this when you have Lupus.
- Non-profit organisation with a focus in fundraising, raising awareness as well as providing support groups. They have a very caring and friendly Facebook support group, please request to join if you are interested. It is a closed group, so only the people who belong to the group can see all the messages.
M
Monash Medical Centre – Lupus Clinic
- Established Lupus Team with a strong focus on research as well. Excellent support if you live in South Eastern suburbs of Victoria.
N
National Institute of Diabetes and Digestive and Kidney Diseases
- US based. Excellent resources to learn more about Lupus Nephritis.
National Resource Centre on Lupus – by Lupus Foundation America
- This is a new initiative and webpage, but it is extremely useful. It contains very informative fact sheets including knowing and understanding different Lupus markers and biochemistry and how to interpret and understand your own test result when you go to your specialist. Understanding Lupus is essential in better managing your condition! You are in-charge of your body and health as much as the specialist. Knowledge is Power.
New Zealand Dermatological Society
- I love this website so much! I learned a lot about the different ways that Lupus affects our skin. I always look to make sure that any medical articles are cited and reference correctly to make sure that the information I read is credible.
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Lupus Care Community 