By Sharon McGowan, Stroke Foundation Chief Executive Officer
“Daddy, why isn’t your hand working? Daddy why are you getting shoes and socks mixed up?” Oscar, 4.
Far too many young Australians are having strokes. This devastating disease turns lives upside down at a time when many people are just starting to lay the foundations for their future. Families can be thrown into turmoil and careers can be cut short. Read More
By Emma Power
The Sydney Sexuality Group is a multidisciplinary research team based primarily at the University of Sydney with the aims of facilitating improved outcomes around intimacy and sexuality for people with acquired disabilities, especially stroke and younger stroke survivors. Our prior work includes examining the impact of stroke on female sexuality and clinician’s perspectives of addressing sexuality after stroke with survivors. Read More
Authors: Natasha A Lannin (pictured below); Craig S Anderson; Joosup Kim; Monique Kilkenny; Julie Bernhardt; Chris Levi; Helen M. Dewey; Chris Bladin; Peter Hand, Helen Castley, Kelvin Hill; Steven Faux; Rohan Grimley; Brenda Grabsch; Sandy Middleton; Geoffrey Donnan, Dominique A Cadilhac.
“In this paper, we found that younger stroke patients were more likely to be of Aboriginal and Torres Strait Island origin compared to older patients (4% vs. 1%) which may in fact reflect the proportions seen across the general Australian population, but it could be indicative of a higher incidence of stroke in younger Aboriginal and Torres Strait Islanders. Perhaps our thinking around this is because we acknowledge that Aboriginal and Torres Strait Islander people are disproportionately affected bycardiovascular disease; currently, however, what is less clear from large epidemiological samples is the incidence and proportions of stroke. Read More
On Tuesday 24 October 2017, twenty eight consumers and twenty seven researchers met for a Stroke Research Consumer Forum. Almost half of the consumers were young stroke survivors. Two stroke survivors were involved in the planning of the day and one helped facilitate the day.
The event was an initiative of the Centre of Research Excellence (CRE) in Stroke Rehabilitation and Brain Recovery. The CRE is funded by the National Health and Medical Research Council (NHMRC). Read More
By Nick Rushworth, Executive Officer
Whenever I speak about brain injury it’s always with stroke as its largest subgroup. At the same time, I’m ashamed to admit that Brain Injury Australia has done next-to-no stroke advocacy, focussing instead on traumatic brain injury. But whenever Brain Injury Australia has been held to account for this blind spot in its advocacy, it’s invariably been at the hands of young strokes – who end up in with Brain Injury Australia as an advocate of last resort, frustrated by one or all of the acute care they didn’t get, the rehabilitation they didn’t get enough of, or the dearth of age-appropriate supports in the community. Read More
By Julie Bernhardt, Principal Research Fellow
Florey Institute of Neuroscience & Mental Health
As a clinician researcher it’s been clear to me for some time that too little attention has been directed to the challenges facing younger stroke survivors. We neither have a service dedicated to their specific needs, nor strong, global endeavors around prevention, understanding and treating younger stroke survivors.
At the Florey Institute of Neuroscience and Mental Health here in Melbourne, Australia, which is based at one of Melbourne’s large public teaching hospitals, we’ve been talking about the challenges facing researchers and survivors in this space in earnest for the past two years. Neurologist Vincent Thijs who heads up the stroke servicehas a specific interest in the genetic of young stroke. Read More
By Janet Bettger, Duke University
Life can change in an instant. Without notice, a stroke can be life-altering with rippling effects that extend far beyond the individual and years into the future. Yet, significantly more attention is paid to what happens in the first week and month after a stroke than the time that follows. Young stroke survivors are telling us that we need to shift the conversation from what it takes to survive a stroke to what it takes to help live.
By Nicole Phelix, 26, Young Stroke Survivor, Myrtle Beach, South Carolina
As a young stroke survivor, it is uplifting to hear others are driven to research the gap in services available. There are several elements of young stroke lacking research, data, and advocacy; prevention and services for survivors are undoubtedly some of these. The treatment and care I received in the hospital, acute inpatient and outpatient rehabilitation settings was outstanding, and the progressI’ve made thus far is all thanks to the caring providers in each facility. Read More
By Barbara Wolfenden, BA, BSW (Hons), PhD candidate. La Trobe University, also The Florey Institute of Neuroscience and Mental Health
‘You are too young to have a stroke, it must be something else…’, was my bewildering inpatient encounter with young stroke in 2004. I was discharged home after 36 hours of observation, with medication to treat migraine, but no further pursuit of diagnosis. I was treated free-of-charge in a public hospital. I retrieved my Discharge Forms under the Freedom of Information Act. Recorded on my discharge notes was, ‘Mild headache with shimmering in eye but unlike usual migraine – quickly relieved with paracetamol’. Read More
