Preview above: Insight finds out how Australians are managing their chronic pain. Full ep. on SBS On Demand.
At her worst, Amy O’Sullivan was spending half her time in a wheelchair, relying on her family to help her walk, eat, shower and more. For her family, they were left on tenterhooks, going to bed each night not knowing if their daughter would live to see another day.
From the age of 19, O’Sullivan began to suffer from a host of chronic conditions. These conditions were initially manageable and O’Sullivan carved out a career as a fitness professional. But slowly, her symptoms increased in severity and she began to experience extreme exhaustion, nausea, hand tremors, bone pain, cognitive decline and more. Then in 2013 her health took a turn for the worse.
“I suddenly started having what I thought was anaphylactic shocks …my throat would close over, I’d lose control of my tongue, I’d faint, stop breathing, and that’s when we couldn’t ignore it because we were having to call in an ambulance,” O’Sullivan explained.
Countless trips to the hospital, and tests conducted by doctors and specialists, failed to give O’Sullivan answers as to what was causing her symptoms.
“I was just handballed from doctor to doctor, I came home completely disheartened, un-validated, confused and scared. My quality of life was diminishing so rapidly that it was so obvious that something was severely wrong but no one knew, and everyone just kept wanting to send me to someone else.”
Finally, O’Sullivan found a doctor who, after running multiple tests different to any she’d had before, diagnosed her with a multi systemic illness. Every system and organ of her body had been affected.
Despite the diagnosis, the treatments offered in Australia were unsuccessful. O’Sullivan was forced to go overseas for treatment, not once but twice. Her family fundraised for the first trip, then sold everything they could, including their business, to send her overseas again. A challenging three year period ensued but slowly O’Sullivan made what she describes as a full recovery and she is now able to manage minor symptoms that sometimes still occur.
“Life is a lot different, there’s a part of me that feels bad because I got out of it, that I got to escape that, but there’s also a part of me that’s so grateful that I’ve been given a second chance.”
O’Sullivan is hoping Australia can improve its diagnosis and treatment options for those with chronic illnesses and is sharing her experience with the experts behind the newly formed group. They want to transform the way we research some of the most complex and poorly understood conditions, such as tick borne disease, motor neurone disease, chronic fatigue syndrome and more. They will be exploring the correlation and connection between environmental microbes and chronic disease.
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A new approach to chronic illness
Around 11 million Australians are currently living with a chronic disease, according to the
The more than one-quarter of diseases are environmental. It’s for this reason that PANDIS founder, Professor Gilles Guillemin, decided a different approach was needed when treating chronic illness.
According to Prof. Guillemin, environmental microbe disruptors (i.e. a large number of biological compounds that alter the human body's self-regulating process) can weaken the immune system, making the human body more vulnerable to infections and chronic diseases. When the immune system is disrupted, patients with chronic disease are more prone to have persistent pathogens in their body, leading to a general health decline with impact on immunity and behavior.
Prof. Guillemin said our current medical approach to treating patients, and understanding all these underlying factors, is extremely siloed.
“We want to break this wall and make something happen and really understand the diseases and which bacteria is making these patients so sick for 10 or 15 years,” the microbiologist, virologist and neuroscientist said.
“We have to do something, we can’t just wait and just do little lab projects, it doesn’t work.”
PANDIS will be connecting patients with a team of leading doctors and scientists who will work collaboratively to try and identify the causes and effective treatments for the illness.
“What we’re trying to build with PANDIS is that for each illness we have the A team, the best experts I could find in Australia and around the world.”
The PANDIS team have begun recruiting patients who will be assessed by a team at the Royal North Shore Hospital in Sydney. The first branch of PANDIS will be looking at tick borne disease, followed by chronic fatigue syndrome. They will then move on to other chronic conditions.
O’Sullivan hopes the formation of this new team will create lasting change in Australia and patients will no longer be sent to specialist after specialist, which can have a huge impact on one's finances.
“I just want to change the face of chronic illness here, improve patient outcomes, increase awareness for better and earlier diagnostics and more effective treatments."
“It shouldn’t be a lifetime sentence.”