How a lupus diagnosis led to paraplegia: Georgina’s story

After a lupus-induced spinal cord injury, Georgina Fiorentino found hope and independence through the support of the Spinal Research Institute.

Georgina Fiorentino had experienced blood clots as a complication of lupus disease before, but when one formed in her spine in 2003, she never imagined the lifelong consequences.

“(It) caused a complete paraplegia, so I have no movement or feeling from the waist down,” Georgina, 51, says.

“You wouldn’t ever suspect that could happen, but that’s what happened to me.”

Georgina is one of almost 21,000 Australians living with a spinal cord injury (SCI).

Depending on the severity and where it is located, a spinal cord injury can present significant life challenges, such as paralysis and loss of sensation, and can impact bodily functions including bowel, bladder and sexual function, breathing and sleep, as well as emotional health.

Quality of life

Researchers around the world continue to work on finding a cure for spinal cord injury.

Meanwhile, understanding how to help people living with a spinal cord injury improve their health and quality of life is just as important, says Spinal Research Institute (SRI) chief executive Kristine Hendry.

“Cure-focused research goes hand in hand with research that enables people to live well today,” Kristine says.

SRI is a Melbourne-based charity that supports researchers who are developing programs and interventions that help people with a spinal cord injury lead healthy and productive lives.

“(Life) will be different but it can be good as well,” Kristine notes.

The charity has three key areas of focus.

“One is research collaboration to help researchers across Australia work together and with international colleagues to create multi-centre studies,” Kristine says.

“Another is working to involve more people with spinal cord injury, and their carers, in research.

“And we also support early career researchers through our grants and mentoring program, because we know it’s really important to attract and retain that next generation of researchers.”

Valuable insights

Clinical researcher Dr Gillean Hilton benefitted from an SRI travel grant to the United Kingdom as part of her PhD in 2017.

She says SRI support allowed her to gain valuable insight into overseas practices, along with professional connections, which she has been able to use to benefit spinal cord injury services in Australia.

“I became very connected to an organisation called Back Up Trust in the UK that is driven by people with lived experience of spinal cord injury and provides courses and mentoring programs for people who are new to living with SCI,” Dr Hilton says.

With the confidence gained from the travel grant and international and local connections, Dr Hilton established a Skills for Independence program with three local colleagues.

The program relies on specialist peer leaders facilitating practical skills courses for people with spinal cord injury, helping them to develop the skills, knowledge and confidence to participate more fully in everyday life.

“Skills for Independence offers tailored and immersive courses for people with spinal cord injury, led by people who have lived experience and have also completed extensive training as peer leaders,” Dr Hilton explains.

“My travel grant allowed me to see what was happening around the world and motivated me to bring that to Australia to fill a gap (in care) that I had observed for a long time.”

Everyday skills

Skills for Independence offers a variety of courses with a strong focus on skills development for the everyday.

“The courses have mixed content — it might be wheelchair skills, or a session on catching public transport, or around getting dressed, or managing going away from home,” Dr Hilton explains.

“With the residential courses, the participants are away from the comfort of their own home for four to five nights, so it’s quite a challenge to be there in the first place.

“But they’re learning together with a group of people in a safe, supported and motivating environment — it’s very powerful and often transformational.”

New horizons

Georgina says the abilities and confidence she has developed after participating in several Skills for Independence courses have opened her eyes to new possibilities.

“It’s been a game changer for me. I am now able to venture out on my own in my wheelchair to places I would have found daunting and scary, such as different terrains or obstacles to navigate,” she says.

“In the residential course, you’re learning a lot of day-to-day skills but without your partner or a carer with you.

“So, you’re having to problem solve and work your way through different examples — even just opening the door of the hotel room or setting up your suitcase.”

Georgina says she possibly could have been more independent years earlier had such courses been available and is loving exploring the different ways she can apply her new skills.

“I’d be confident with a weekend away with my girlfriends now, whereas if you asked me a couple of years ago, I would have said, ‘Absolutely not’. It’s just magnificent.”

World Spinal Cord Injury Day is September 5.

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Written by Claire Burke.