New support group for myositis forms in Geelong

A local woman has detailed her “just inexplicable” symptoms including rashes, thickening scaly skin and burning aching pain in her limbs.

A local woman suffering a painful inflammatory disease is calling for more research and investment into rare illnesses.

Katie, who did not wish to have her surname published, said her health woes began after contracting glandular fever as a teenager.

She said she did not properly recover.

“I would have periods of not being able to keep up with my peers,” the 57-year-old Geelong region resident said.

She said she developed “just inexplicable” advanced symptoms associated with dermatomyositis, including rashes, thickening scaly skin and burning aching pain in her limbs, aged 39 in 2004.

She said she spent thousands of dollars on tests until she was finally diagnosed with dermatomyositis in 2018.

Dermatomyositis is a rare inflammatory disease, with common symptoms including a distinctive rash, and inflamed muscles causing weakness.

There is no cure, and it can be associated with increased risk of developing cancers.

Katie said it was a relief to finally be diagnosed, after years of feeling dismissed and not believed by health professionals.

“For me, information and collaboration really help me manage situations that are scary,” she said.

Katie gets around in a decorated mobility scooter. Picture: Alison Wynd

Katie takes about 30 tablets per day to help manage her condition and undergoes chemotherapy.

She deals with fatigue, and says her productivity wanes depending on where she is in her chemotherapy cycle.

“I only get a certain number of (productive) hours a day,” she said.

This also impacted her ability to walk around, and she uses a mobility scooter decorated with Wonder Woman paraphernalia.

Art therapy and physiotherapy also help her manage, and she says her secret for living well with the condition is a sense of humour.

Dermatomyositis is a type of myositis – conditions causing inflammation in muscles.

May is Myositis Awareness Month.

Currently, 10 people from the Geelong area are building a local community, with the newly founded South Western Victorian Myositis Support Group.

It met for the first time last week.

“It’s the first time I’ve met anyone else with dermatomyositis,” Katie said.

“It was really heartwarming.”

It is welcoming new members, and is part of The Myositis Association – Australia.

Katie is grateful to be in Australia with a world-class health system and said she was lucky to receive NDIS support.

But she said rare diseases needed more research.

“If you spend money on (improving) diagnosis … you stop this merry-go-round of testing, reduce the burden on the patient and their family and save the taxpayer money,” she said.

Originally published as New support group for myositis forms in Geelong