Unfortunately, in my opinion, the Lupus communities in Australia still need a lot of help and assistance in growing their presence in the media, or even just providing the support for Lupus patients.
But one of the founders of Lupus Foundation America (Duane Peters) introduced a new initiative which is the World Lupus Federation, where everyone can come to one website to find out a list of organisations around the world as well as resources dedicated for patients with Lupus. This is still in its early stage, but please check the website and also, sign the petition to WHO to make sure that LUPUS is included as one of the autoimmune conditions in their initiative!!!!
Other Lupus Resources and Groups:
- Autoimmune Resource and Research Centre; in my opinion one of the best in Australia, even though they are based in Newcastle!!!
- they run activities and educational sessions for patients with autoimmune diseases
- Move Australia – formerly Arthritis Australia
- they are trying hard to make their organisation better… by changing their name and including other conditions not just Arthritis, that affect joint, muscles and bone problems… so they are trying to include Lupus as well… so, watch the space, was their message. (Frankly, by this time, my migraine was unbearable and I had to resort to Neurofen to survive the day…)
- Syamsi Dhuha FOUNDATION; is Lupus Foundation established in Indonesia in 2003.
- They have actually launched a Lupus Exercise program, which their members have been doing and have reported positive feedback. The exercise is quite gentle, so you can still do it even when you have some degree of pain and discomfort. It is designed to alleviate the stiffness and relief the joint and muscle pain :). Please check their video 🙂
- They also developed a Lupie Diary App; which you can download for free.
- Australian Lupus Registry; something closer to home, this is part of the Monash Health School of Clinical Sciences. They would like to launch a “Lupus Portal”, which is basically, almost like the Lupie Diary App, but you would log in and then record your symptoms daily.
- The idea is so that apart from personal collection, the researchers can also use the data for research; for example, finding the relationship between weather changes and the severity of fibromyalgia (which a lot of Lupus sufferers have on top of everything else we have)
- Such information is not available at the moment because there is a lack of data, so this is one way that we can all participate for the greater good of finding better treatment for the myriad of conditions, pain and suffering we encounter!!!
- If you think this idea worth a try or you are interested to know more, please express your interest by:
- emailing: firstname.lastname@example.org
- subject: LUPUS PORTAL
International Lupus Foundation and Lupus Bloggers:
There are so many WARRIORS out there who are doing such magical works that we need to support. Please check their website when you get a chance, albeit for a little inspiration of how different it is to live with Lupus in other country…. and how lucky we are still, to have access to a lot of treatment for Lupus in Australia.
- Sometimes it is Lupus – Iris Carden is a Lupie and blogger from Queensland!!!
- Oyemam Autoimmune Foundation; based in Ghana.
- Lupus Foundation of Philipines; based in Philiphines (could not find their website, but I have the President’s email address if you are interested in contacting her, let me know 🙂 )
- Lupus Alert; based in Mauritius.