Wife’s battle inspires lupus support group

A lupus support group targeted at regional communities was started by Busselton resident Eddie Phillips after watching his wife’s condition worsen due to the disease.

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

But after lupus sufferers from as far as Karratha began reaching out to Mr Phillips, the page expanded to include all of regional WA.

“There’s a support group for the metropolitan area, but nothing specifically out there for people in regional communities,” he 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 were female.

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

About 20,000 Australians have lupus, a commonly misdiagnosed autoimmune disease that often leads to complications such as early-onset Alzheimer’s, which affected Mr Phillips’ wife.

He said most people did not know what the disease was and he hoped to change that and encourage more people to get tested as a result.

“I think people would be surprised by how many people in their community suffer from the disease,” he said.

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