Lupus group becomes a regional network

A lupus support group for regional communities was started by Busselton resident Eddie Phillips after his wife’s condition worsened because of the disease.

Recognising the need for support not only for sufferers but for carers such as himself, Mr Phillips started a Facebook page for residents of Busselton, Dunsborough and Margaret River two years ago.

However, with lupus sufferers from as far as Karratha reaching out to Mr Phillips, the page has expanded to include all of regional WA.

“There’s a support group for the metro (area), but nothing specifically out there for people in regional communities,” Mr Phillips said.

“It can be hard to come to terms with an incurable disease and it takes a while for people to talk about it and become comfortable, and I just hope a resource like this will help them do it.”

Mr Phillips said this was especially true for men, who could feel they had a “woman’s disease”, as most lupus sufferers are female.

The page features articles, statistics and other resources, and provides a virtual space for sufferers and carers to discuss their experiences.

About 20,000 Australians suffer from lupus, an autoimmune disease that is commonly misdiagnosed and often leads to complications such as early-onset Alzheimer’s disease, which recently struck Mr Phillips’ wife.

Mr Phillips said most people did not quite know what the disease was and he hoped to change that and to encourage more people to get tested.

“I think people would be surprised by how many people in their community suffer from the disease,” he said. “Even on the celebrity level, icons like Seal and Selena Gomez have been diagnosed with lupus, so it’s definitely more common than people think.”

Mr Phillips said he hoped to hold monthly meetings in the near future, as the page had begun picking up since its expansion.