At the World Stroke Organization, our work with patient stroke support organizations (SSOs) promotes the voice of people affected by stroke in our activities, including the World Stroke Congress and the World Stroke Campaign.
We recognise that people affected by stroke have unique insights into the experience of having a stroke, the effects, the care received and long term needs. These insights can and should inform stroke policy development and service provision. We also know that the voice of stroke survivors adds legitimacy to our advocacy work.
We work closely with our SSO members to capture and share stories from stroke survivors, carers and family members. These stories detail the lived experience of having a stroke, the effects and the impact on peoples’ lives. Often these stories include reflections on individual behaviour and making changes to reduce stroke risk. All the stories are deeply personal, and can describe feelings of pain, fear, confusion and also hope; a new normal and strength.
|Credit: Stroke Foundation Australia|
Recently to mark World Hypertension Day, Sharon McGowan, CEO of the Stroke Foundation Australia and also Co-chair of the SSO Committee at the World Stroke Organization, shared her own story. ‘I thought long and hard about sharing my own health story. I was encouraged by the many stroke survivors who generously share their stories to encourage, educate and support our community. If just one person reads this and takes action to get their blood pressure checked then sharing my shamefully unhealthy past will be worth it’.
As a champion for the voice of people affected by stroke, by sharing her own personal story, Sharon is a great role model to others, and has added a deeper appreciation at the World Stroke Organization of the courage it takes for people affected by stroke to share their personal experiences so openly.
If you would like to add your voice and experience to the World Stroke Organization’s work to raise awareness of stroke, please contact the International Development Manager, Sarah Belson firstname.lastname@example.org