Having a stroke at any age is overwhelming. Having a stroke when you’re young can come with the added challenge of trying to find information that actually reflects your experience.
These are some of the organizations, communities, and resources I’ve found helpful through my recovery journey.
This list is a work in progress. Inclusion here doesn’t mean I endorse every piece of information or advice provided by an organization or community.
Peer Support & Young Stroke Communities
The Stroke Sisterhood: UK-based organization founded by a young stroke survivor, with a focus on supporting women affected by stroke.
Young Stroke Survivors Facebook group: Useful resource for connecting with other survivors, although skews a bit older.
Different Strokes:UK charity run by younger stroke survivors. They have a befriending service for stroke survivors aged 16-25.
American Stroke Association – Support & Resources: Offers online and in-person support resources for stroke survivors and caregivers, including a support-group finder
Stroke Education
American Stroke Association: One of the most comprehensive places to start for information about stroke, including causes, effects, treatment, rehabilitation, and life after stroke.
World Stroke Organization: International organization focused on stroke prevention, treatment, research, and awareness.
Stroke Fatigue – American Stroke Association: An introduction to post-stroke fatigue. Experiencing debilitating fatigue after your stroke is a normal part of recovery.
Mental Health & Trauma
Stroke recovery isn’t only physical. Depression, anxiety, grief, trauma, fear, and changes in identity can all be a part of recovery.
International Society for Traumatic Stress Studies: Research-based information and resources related to traumatic stress and PTSD.
Emotional and Behavioral Effects of Stroke: The American Stroke Association has lots of great resources on the mental health effects of having a stroke.
Crisis Support
If you’re thinking about suicide, please reach out for immediate support.
United States: 988 Suicide & Crisis Hotline. Call or text 988.
United Kingdom: Samaritans. Call 116 123.
Sweden: Mind Självmordslinjen. Call 90 101 or use their anonymous online chat. If you are in immediate danger, call 112.
Elsewhere: If you’re in immediate dnager, contact your local emergency service or a crisis service in your country.
A quick note about online communities
Facebook groups, Reddit, TikTok, and other survivor communites can be incredibly valuable, especially when you’re young and don’t know anyone in your real life who has experienced a stroke.
They also contain a lot of medical advice from people who are not medical professionals. I personally find survivor communities most helpful for questions, like “has anyone else experienced this?” or “how did you cope with this?” For medical questions, always turn to your healthcare providers.
Young Stroke Survivor 