Sickle Cell Society Podcast
The Sickle Cell Society is having open discussions about challenging subjects in this podcast.
There are challenges to living with sickle cell disorder, and there are a lot of subjects that aren't openly discussed, in a way that might help others to live their best life with the condition. We are unpicking some subjects by inviting sickle cell doctors and patients onto the podcast couch to share their experiences and answer questions.
About us
We're the Sickle Cell Society, and we're the UK’s patient charity for people living with sickle cell disorder.
We believe that people living with the condition have the right to quality care. We support and represent people, patients and families affected by sickle cell disorder to improve their overall quality of life.
We work with health care professionals, pharmaceutical companies, researchers, parliamentarians, parents, and people living with sickle cell to support and advise, raise awareness of the disorder and campaign for improvements in treatments and care. Our aim is to support those living with sickle cell, empowering them to achieve their full potential.
Sickle Cell Society Podcast
1. Introduction : My life with sickle - a patients perspective on living with sickle cell disease and priapism.
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Living with sickle cell – podcasts with Mr Majed Shabbir, Consultant Urological Surgeon at Guy’s and St Thomas’ NHS Foundation Trust, and Andrew*, who lives with sickle cell disorder
This series gives an insight into living with sickle cell disorder, and is aimed at patients with sickle cell, their friends, loved ones, family, and carers, and anyone else who wants to understand what life is like for those with one of the most common single gene disorders in the world. It is useful for healthcare professionals who encounter patients with sickle cell, giving them some perspective of what the condition is like for the person they are treating.
In this series of short, bitesize podcasts, Andrew talks frankly about how sickle cell has affected different aspects of his life, from his first crisis when he was 5 years old. In discussion with Majed Shabbir, Consultant Urological Surgeon at Guy’s and St Thomas’, Andrew talks about his experiences growing up as the only child in his immediate family with sickle cell, describing what having a crisis feels like and the impact the disease had on his professional life as a pharmacist. Their discussion turns to other aspects of the condition, which are not often openly discussed, including the toll priapisms (painful, unwanted, protracted erections, which are sickle cell crises of the penis) have, and how Andrew managed relationships and intimacy with sickle cell priapism.
*Andrew has shared his honest views, which are his own personal experiences, as part of his desire to improve awareness and understanding of sickle cell disease and priapism. To protect his identity and at his request we have not used his real name.
In this episode :
1. Introduction - Majed Shabbir introduces the series of short conversations with Andrew about 'Living with Sickle Cell’. Andrew is one of many patients who attends the Joint Sickle Cell / Urology specialist clinic at Guy’s Hospital for men who have sickle cell priapism.
Series Credits:
Interviews by Majed Shabbir, Consultant Urological Surgeon, Guy’s and St Thomas’ NHS Foundation Trust, London
Editing by Anthony Emmanuel, Consultant Urological Surgeon, The Freeman Hospital, Newcastle upon Tyne
@SickleCellUK
https://www.sicklecellsociety.org/
Charity no. 1046631
