The lovely Amanda shared this on Facebook earlier this week, and would like it shared further:
Dear Facebook Friends,
There are more people with Lupus than AIDS, cerebral palsy, multiple sclerosis (MS) and cystic fibrosis combined. Despite Lupus also being quite a debilitating illness, there is currently no Australia-wide support network for Lupus sufferers. As a result, many sufferers aren't able to access information and support to give hope for maintaining a proactive lifestyle. My personal experience of seeking out support in Brisbane connected me to groups that are inactive at best. As a result, I felt ignored, swindled, sad, angry and very, very scared. I was no longer looking forward to my future and started to rethink my life goals, such as my engagement. I want to prevent this happening to Lupus sufferers in future.
Working with the support of Lupus Association of NSW, I have a proposal to create a support network in QLD. We are applying for a grant with the Medibank Community Fund, and one criteria is that we need as many Lupus sufferers as possible to write to firstname.lastname@example.org, explaining what a local Lupus support group would mean to them. Normally I don't ask people to share my posts, anbut please share this one so that we can reach as many people as possible.
Lupus Association of NSW has alleviated my fears and educated me in how to best care for myself, advised me how to tell others about my condition to obtain support, saved my future marriage, and linked me to others who can help or relate. If one support organisation in one area of Australia has done that for one person, imagine what an Australia-wide support network would do for millions of sufferers, their family and friends!