Misdiagnosed for more than four years after a 2007 accident, Soula and Theo Mantalvanos have fought on to develop a patient-driven health record system that is now an award winner, Cam Ward writes.
The ingenuity that saw Soula and Theo Mantalvanos begin a new career after a devastating accident may soon be helping others facing a similar burden.
The couple have run the Queenscliff Gallery for a decade, having been forced to give up their Melbourne graphic design business when Soula, an artist in her own right, was injured in 2007 after a fit ball she was sitting on collapsed and dropped her onto a concrete floor.
She endured chronic pain for 4½ years before eventually being diagnosed with severe pudendal neuralgia, a condition that still impacts her life.
“We manage all the information, like our licence, our insurance, our everything, but we don’t manage our own health.”
Like anyone with a complex medical condition, the pain Soula experiences is not always physical. But not everything has been beyond her ability to lessen, if not cure.
In 2016, she founded My Health Story (MHS) as her response to years of personal misdiagnosis. The online subscription platform allows clients to store, access, and manage their personal medical history. They can share it with medical specialists ahead of appointments, thus saving them the burden of continually having to speak about their condition every time they have an appointment with someone new.
The information can be shared simply via an MHS link. More importantly, if the meeting doesn’t work out the link can be withdrawn and the specialist then locked out from accessing it.
“It was something that came about obviously from the lived experience, something that I needed so desperately because you’re out there, you’re repeating the story, no one understands
