The Keeping in Touch support group gathering at Commercial Club brought myositis patients and their partners together as part of Myositis Awareness Month.

Myositis Association Australia president Christine Lowe travelled from Melbourne to support the group. which included about five new members after Border patients shared their stories last week.

Ms Lowe said the incurable inflammatory condition was hard to diagnose and not widely understood by GPs, which could exasperate patients.

"But there are 7000 rare diseases in the world and so it's very difficult for GPs in the 15 minutes they spend with you each time to filter through all the possible illnesses you might have and strike upon a rare disease," she said.

"They may never see another patient with it in their whole career."

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Bellbridge's Dean Preston, 58, said his first indicator was when he "hopped out of bed, ready to go to work, and my legs just collapsed".

A sales representative for DLG Aluminium and Glazing, Mr Preston noticed symptoms five years ago but his diagnosis took two years to confirm.

"At the moment, I'm not too bad, I'm still working full-time," he said.

"With my job, it's really being careful with stairs and things like that."

"New homes getting built, I'm walking up and down stairs, measuring things."

More information about myositis is available at myositis.org.au/

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