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
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 cases of Alström syndrome. Using his clinical expertise, Dr. Barrett gives us insight into what Alström syndrome is and how it affects various individuals.
We talk about diagnosis and th...
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, rese...
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 daily life and dealing with a rare disease to emotional health, independence and planning for the future, Melissa shares a personal insight into living with Alström.
Melissa’s story show...
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 with an ultra-rare disease. We talk about the obstacles Haris has been through in his life, how he copes with those and the importance of achieving confidence and independence at all times. &...
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.
Kerry looks back at the journey of having received an Alström syndrome diagnosis and talks about the experience that she has been through. She discusses the challenges, uncertainties and ...
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, living with the condition, and managing the different issues they face during their lives.
In this episode, we talk to Sarah Oliver and Clair from Alström Syndrome UK, both of whom have...
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 researcher working on Alström syndrome at a cellular level.
Laylaa talks about the role of ALMS1 gene and how understanding the effect of changes in this gene on cells is critical in Alst...
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, their families, researchers and healthcare professionals, and in each episode, we gained a new perspective on living with and treating the Alström syndrome.
In this last episode of the se...
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 talk about their experiences, make new connections and help each other out.
By talking to families, patients, scientists and health care professionals, I try to understand the power of con...
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