Sickle Cell Society Podcast

Sickle Cell Society

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 usWe'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.

  1. 10. Advice to my younger self : My life with sickle - a patients perspective on living with sickle cell disease and priapism.

    4d ago

    10. Advice to my younger self : My life with sickle - a patients perspective on living with sickle cell disease and priapism.

    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 of podcast episodes 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 condition had on his professional life as a pharmacist. Their discussion turns to other aspects of sickle cell disease, 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 : 10      Advice to my younger self – Andrew’s concluding message of hope amid the challenges of life with sickle cell, and the importance of striving to see life from the patient’s perspective. 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

    3 min
  2. 9. Improving management of sickle cell : My life with sickle - a patients perspective on living with sickle cell disease and priapism.

    4d ago

    9. Improving management of sickle cell : My life with sickle - a patients perspective on living with sickle cell disease and priapism.

    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 : 9.       Improving management of sickle cell – highlighting the need to raise awareness of all aspects of sickle cell disease among patients from an early age, as well as among healthcare workers and the public. 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

    3 min
  3. 7.Priapism: Sex and relationships : My life with sickle - a patients perspective on living with sickle cell disease and priapism.

    4d ago

    7.Priapism: Sex and relationships : My life with sickle - a patients perspective on living with sickle cell disease and priapism.

    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 : 7.       Priapism: Sex and relationships – Looking at the significant effect priapisms had on relationships, and considerations for starting a family. 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

    5 min
  4. 6.Priapism: Sleep studies and therapies : My life with sickle - a patients perspective on living with sickle cell disease and priapism.

    4d ago

    6.Priapism: Sleep studies and therapies : My life with sickle - a patients perspective on living with sickle cell disease and priapism.

    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 : 6.       Priapism: Sleep studies and therapies– Andrew and Majed discuss different therapies, and how oxygen therapy transformed Andrew’s experience of priapism, and its impact on his life. 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

    4 min
  5. 5. Managing priapisms : My life with sickle - a patients perspective on living with sickle cell disease and priapism.

    4d ago

    5. Managing priapisms : My life with sickle - a patients perspective on living with sickle cell disease and priapism.

    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 : 5.       Managing priapisms – Andrew talks about how he has tried to manage painful priapisms since his first episode age 19, the impact on his life and the treatments he has undergone.  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

    5 min
  6. 4. Sickle cell and my work life : My life with sickle - a patients perspective on living with sickle cell disease and priapism.

    4d ago

    4. Sickle cell and my work life : My life with sickle - a patients perspective on living with sickle cell disease and priapism.

    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 : 4       Sickle cell and my work life – Explores the impact sickle cell had on Andrew’s day to day working life. 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

    4 min
  7. 3. Having a sickle cell crisis : My life with sickle - a patients perspective on living with sickle cell disease and priapism.

    4d ago

    3. Having a sickle cell crisis : My life with sickle - a patients perspective on living with sickle cell disease and priapism.

    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 : 3.       Having a sickle cell crisis – Andrew shares what having a crisis was like for him – the physical pain, challenges presenting at hospital A&E departments at home and abroad, reflections on how he was treated, and his campaign to raise awareness of the condition to improve understanding. 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

    7 min
  8. 2. Growing up : My life with sickle - a patients perspective on living with sickle cell disease and priapism.

    4d ago

    2. Growing up : My life with sickle - a patients perspective on living with sickle cell disease and priapism.

    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.       Growing up with sickle cell – Andrew talks about the challenges of growing up with sickle cell as a child – how he was the only person in his immediate family with the condition, and the strain the condition put on him.  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

    6 min
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About

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 usWe'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.

Information

  • Creator
    Sickle Cell Society
  • Years Active
    2024 - 2026
  • Episodes
    13
  • Rating
    Explicit
  • Copyright
    © 2026 Sickle Cell Society Podcast
  • Show Website
    Sickle Cell Society Podcast