Rare Diseases Day: Mooroopna's Clare Brown has a rare degenerative muscle disease

And while looking back to the past is painful, looking to the future has its own deepening sting.

All she has is the here and now.

“I just remind myself, ‘I'm here today’," she said.

“I do have my downs, but I try to stay up. I'm just taking it one day at a time.”

Clare, 75, has inclusion body myositis (IBM).

It is one of three primary adult myositis diseases — rare autoimmune conditions which see the body's immune system turn against itself, destroying healthy muscle tissue.

Weakened thigh muscles are usually the first sign of trouble, with patients struggling to walk distances, climb stairs, stand up from chairs or rise from the floor.

But arm and leg muscles aren't the only ones affected.

IBM can also impact the heart, lungs, swallowing muscles, hands, fingers and lower legs.

There are still more questions than answers surrounding the disease; the cause is unknown and as for effective treatments, this has left doctors stumped.

With no cure and little available to stem the disease's relentless advance on her body, Clare is joining others in raising awareness this Rare Diseases Day, February 28.

The Mooroopna water tower will also be lit up on the day, joining other landmarks across the globe in acknowledging the estimated two million Australians living with a rare condition.

Clare and her partner (and now dedicated carer) Kerry were in Queensland more than a decade ago when the first signs of IBM began to show.

“I noticed I couldn't walk as far,” Clare said.

By 2013 she was having trouble climbing steps and needed help getting out of chairs.

While Clare had actively helped Kerry with his farming throughout the years, she had begun to turn her attention to craft, sewing baby clothes and making candles to sell at markets.

But soon even that became a struggle.

“My fingers went stiff, so I couldn't bend them. I started to drop things,” she said.

“I'd had all the tests done, but no-one seemed to know what was wrong.”

Handballed from doctor to doctor, Clare was finally sent to Melbourne for a muscle biopsy in 2015, where she finally received her diagnosis.

“The doctor said, ‘I'm sorry, but there's nothing we can do for you, there's no cure’," she said.

“That was a terrible day.

“I just said, ‘There must be something you can try.'”

The only suggestion: monthly intravenous immunoglobulin.

Some evidence has suggested these infusions may help slightly to slow the disease's progression, but only in a small number of cases — and the benefits don't last long.

All IBM patients can do is wait anxiously for a breakthrough.

Today, Clare is largely bound to her chair, only able to walk short distances on a walker.

“I just sit around all day, taking pills and eating vegies,” she said.

“I can't sew, can't garden. It's heartbreaking.”

She also has a lung condition, bronchiectasis, which is now aggravated by IBM.

“You get phlegm on the lungs and you have to cough it up,” she said.

“But because the muscles have become weak on my diaphragm due to IBM, it makes it harder to do that.”

Twice a week, Kerry will lift her onto a rowing machine where she'll complete 20 excruciating rows in an effort to keep her legs and arms moving.

They used to go for drives together to get Clare out of the house, but that's been harder with COVID-19 lockdowns.

She's found phone calls with friends and family to be a lifeline.

“Kerry says I'm a snoopy person, I like to know what's going on,” Clare said with a laugh.

“I think that's what keeps me going.”

Clare tries not to look to the future too much.

“I don't like what I see,” she said.

“My lungs will probably give in on me. But a lot of people end up wheelchair and bed-bound, needing full-time care.

“I think we're lucky we've got that new (voluntary assisted dying) law down here — if you get really bad, you can do something about it.”

The Mooroopna grandmother is also comforted by the knowledge she's not alone — she is one of three people in the area living with the condition.

In addition to supporting each other and sharing tips, they're working to raise awareness.

“People need to understand there are a lot of rare problems around, and we each face different struggles and have different needs,” she said.

“If people are aware of this, they may even want to help.”

Rare Disease Day is on Sunday, February 28. The Mooroopna Water Tower will be lit up on the day.

To learn more or donate, visit rarediseaseday.org