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Living with Alström: Stories, Challenges and Hope
Living with Alström: Stories, Challenges and Hope
is a podcast created by Abdullah Jawad, a media production master's student at Birmingham City University, who himself has Alström syndrome.
Combining personal stories with professional expertise, this series invites patients, families, clinicians, researchers and support workers for discussions on what it is like living with one of the rarest genetic diseases.
In these nine episodes, expect to hear open discussions on topics such as diagnosis, research, family support, daily life, community and future hopes.
As part of a Master’s research project, this podcast is created to raise awareness on Alström syndrome, as well as give voice to the people with first-hand experience of the syndrome.
Any opinions and experiences expressed by our guests are personal and meant to raise awareness and educate. Please note that this podcast does not constitute medical advice of any kind. Consult a doctor for any health concerns you might have.
For further information on Alström Syndrome UK:
https://www.alstrom.org.uk/https://www.alstrom.org.uk/
Music:
Music by Scott Buckley licensed under CC BY 4.0 . www.scottbuckley.com.au
Living with Alström: Stories, Challenges and Hope
Episode 0: Welcome and Introduction
Use Left/Right to seek, Home/End to jump to start or end. Hold shift to jump forward or backward.
Welcome to Living with Alström: Stories, Challenges and Hope.
In this introduction, I explain why I created this podcast and share my personal connection to Alström Syndrome as someone living with the condition myself.
Across the series, I explore what it means to live with Alström Syndrome through conversations with people from different parts of the community, including patients, families, healthcare professionals, researchers and those involved in support and awareness.
The series looks beyond the medical diagnosis to explore lived experience, family life, support, research, community, awareness and hope for the future.
This introduction sets the scene for the journey ahead and explains why raising awareness of Alström Syndrome matters to me personally.
Learn more about Alström Syndrome UK:
Alström Syndrome UK
Music:
Music by Scott Buckley: released under CC BY 4.0 www.scottbuckley.com.au
Disclaimer:
The views and experiences shared by guests are their own and are intended for awareness and educational purposes. This podcast is not a substitute for professional medical advice. If you have concerns about your health, please contact your healthcare professional.