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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
Episodes
9 episodes
Episode 1: Clinical Expertise with Dr Tim Barrett
What is Alström syndrome, how can it be diagnosed and what can specialist care look like for those living with this ultra rare condition? In this episode, I talk to Dr Tim Barrett who is one of the UK’s top clinicians dealing with ...
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Episode 2: Research and Hope with Laylaa Islam
What will be the future of research into Alström syndrome, and would knowing more about this condition change the future of treatments for it? In this episode, I have the pleasure of speaking with Laylaa Islam, who is a PhD r...
Episode 3: Supporting Families with Sarah & Clair
Living with a rare disease often affects more than physical well-being and this is certainly the case for people living with Alström syndrome. The support that they get can play a critical role in dealing with the various aspects of diagnosis, ...
Episode 4: Leadership and Motherhood with Kerry Leeson-Beevers
In this episode, Kerry Leeson-Beevers gives us insight into her view on Alström syndrome from two very interlinked angles; that of being the mother of a boy who has Alström syndrome and being the Chief Executive of Alström Syndrome UK. &n...
Episode 5: Living with Alström, Harris Hamid story
In this episode, Haris Hamid shares with us his personal journey of living with Alström Syndrome and the experiences he has had along the way. Using personal insights, Haris discusses how his daily life looks like when living...
Episode 6: Living with Alström, Melissa Crowland story
How does it feel to live with Alström Syndrome? In this episode, Melissa Crowland talks about her experience of living with Alström Syndrome and tells the story of how it has affected her life. From the difficulties of...
Episode 7: Community and Connection (Alström Family Festival)
What is community if you are living with an ultra-rare disease? In this episode, I introduce you to the Alström Syndrome Family Festival in New College Worcester, where members from all over the Alström community gather to ta...
Episode 8: Hope, Awareness and the Future
This is the last episode of the podcast, where I reflect on our journey through the series and share some thoughts about the stories and perspectives that we listened to throughout this period of time. We spoke to patients, t...