Wiradjuri woman Charlotte Porter is intent on making a difference to other working age stroke survivors.
Almost two years after suffering a debilitating stroke, the 31 year old has been selected to join the Lived Experience Working Group as part of the Stroke Foundation Young Stroke Project.
The Stroke Foundation Young Stroke Project is funded by the National Disability Insurance Agency (NDIA). It will help working-age Australians (18-65) find their ‘new normal’ after stroke by determining their unique needs and developing information and resources to better meet them.
Charlotte said she was honoured to be part of the group guiding this innovative project.
“Stroke changed my life in an instant. I went from being a busy working mum of four children who enjoyed exercise to being unable to move from a chair or a bed by myself for 15 weeks,” she explained.
“I couldn’t cook or clean, play with my toddler or go to work. It was confronting and incredibly challenging for me and my loved ones.
“People don’t talk about stroke much, so I felt alone.”
Stroke strikes in an instant, changing lives for survivors and their loved ones. Like Charlotte, younger stroke survivors have much of their lives ahead of them; children, careers, roles in the community and financial responsibilities. Stroke can impact all of these.
Around 20 strokes a day impact Australians under the age of 65, with 142,000 stroke survivors are of working age. Ninety Six percent of young stroke survivors report having ongoing needs after their stroke and 88 per cent of young stroke survivors report unmet needs across health, everyday living, leisure activities, employment and finance – greater than older stroke survivors.
Hospitalisation rates for stroke are 1.7 times as high among Aboriginal and Torres Strait Islander people compared with non-Indigenous Australians.
The burden of disease for stroke is 2.3 times as high among Aboriginal and Torres Strait Islander people compared with non-Indigenous Australians.
Stroke Foundation National Manager StrokeConnect Jude Czerenkowski said there was currently very little age-appropriate information available for younger stroke survivors.
“Almost 90 percent of younger stroke survivors have specific needs relevant to their stage of life, they are telling us these needs are not being met,’’ she stated.
“Stroke Foundation’s Young Stroke Project will aim to close that gap and give younger people with stroke tools to empower them to live well.
“Information will be available when, where and how it is needed – including videos, podcasts and blogs.”
The Lived Experience Working Group will help guide the project, facilitate engagement with the community, develop project themes and content.
Charlotte said she was determined to ensure other working age people with stroke did not feel isolated in their recovery and were able to navigate the health system effectively.
“Once I left hospital, I did not know where to turn and who to call for support. My husband and I had to work it out on our own. He had to stay home for 15 weeks to help me get back on my feet,’’ she detailed.
“It was tough to see my whole family struggle as we tried to adjust to our new reality.”
The Stroke Foundation Young Stroke Project is seeking feedback from stroke survivors, their partners, families and friends along with health professionals and researchers on topics that need to be addressed. This includes study and employment, relationships and parenting, recreation and self-care, grief and acceptance and navigating the health system.
To find out more about the project or to register your interest visit https://youngstrokeproject.org.au/
The Stroke Foundation Young Stroke Project builds on the Stroke Foundation’s recovery website, EnableMe and telephone service StrokeLine (1800 787 653).
By Melissa Blewitt.