Camp Kulin founder Tanya Dupagne asks for community assistance after controversial disease diagnosis

A woman who has given her all for Kwinana, WA and kids around the world is now looking for community help after she was diagnosed with one of Australia’s most controversial diseases.

Tanya Dupagne says she has battled serious medical symptoms for 10 years.

Despite her own health issues, Ms Dupagne continued to advocate for people in the community, most notably running programs for thousands of at-risk children and traumatised women around the world.

In 2013, Ms Dupagne founded Camp Kulin which helps children between eight and 12 years old learn to communicate, deal with their anger, believe in themselves and persevere.

She was in Order of Australia honours in 2024, received an honorary doctorate from ECU for contribution to the community, was a WA Rural Woman of the Year, one of the Australian Financial Review’s 100 most influential Australian women and an overall winner for the person contributing most to child safety in WA.

“I’m a Kwinana girl, I grew up here and went to school here. Although I’ve done lots of travel, Kwinana and Rockingham people have always been part of that work,” she said.

“The largest number of volunteers for Camp Kulin were from Kwinana.

“Kwinana and Rockingham was the biggest catchment for children who came to camp.

“I was also a City of Kwinana councillor for four years. So much of what I’ve done has come from what I’ve learnt here.”

But while she collected prestigious labels and helped so many, Ms Dupagne struggled to label what was going on inside her own body.

For the past four years, Ms Dupagne hasn’t been able to work, drive or leave the house alone.

She uses a walker or wheelchair and regularly passes out from heart complications.

Doctors all agreed that something was wrong, but none could agree on what it was.

Finally, a blood test from an overseas lab identified Lyme disease.

Because Lyme disease is not recognised in Australia, no doctors were looking for it in Ms Dupagne.

Lyme disease is a tick-borne infection caused by a bacteria called Borrelia and Ms Dupagne believes she was bitten by a tick while working at a summer camp for underprivileged children in the US years ago.

“I’d shown symptoms for so long and waited 10 years for an actual diagnosis, so it was a relief when I finally had a name for what was wrong,” she said.

“The relief was short-lived when I discovered I’d got what is probably the most controversial disease in Australia.

“It meant doctors could treat my symptoms, but not the thing actually causing them.”

Lyme disease and whether it exists in Australia is highly controversial.

Many Australians believe they have become chronically ill after receiving a tick bite but scientists have not found the bacteria Borrelia in Australian ticks.

A cardiologist has since diagnosed Ms Dupagne with severe postural orthostatic tachycardia syndrome.

This means every day her heart beats at dangerous rates and her blood pressure plummets when she does something as simple as standing up.

A urological surgeon diagnosed her with bladder issues requiring regular hospital treatments, she has significant damage to muscles and tendons in her legs and was diagnosed with myalgic encephalomyelitis.

She said it had been hard to find appropriate treatment in Australia.

“I’ve been deteriorating over the past 15 years, but especially over the past few months,” she said.

“I’ve been following overseas treatment success stories for a while and after a lot of research I knew that the clinic in Cyprus was where I needed to be.”

The clinic will treat all of Ms Dupagne’s medical conditions via a customised treatment plan, but it costs more than $50,000 to access.

“It’s not a cure because I’m extremely ill, but the aim is to stop me deteriorating further and get some kind of improvement,” she said.

“Even a 20 per cent improvement means that I’ll be able to do more day-to-day, reduce the amount of time I’m bedridden and get back some quality of life.”

Donations to Ms Dupagne’s cause can be made at mycause.com.au/p/344147/overseas-treatment-for-tanya-dupagne