Sickle Cell Society Podcast

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

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

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

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

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

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

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

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

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

When it comes to sickle cell and thalassaemia; genetic testing and screening— early checks that can identify a condition or carrier status, often before any symptoms appear — can shape life-changing decisions. Yet many people trying to understand their risk still face confusion, stigma, and unequal access to care.

In this episode of The Sickle Cell Society Podcast, host Kesewaa Browne brings together a specialist nurse, screening experts and people with lived experience to unpack everything about screening and testing, including when it should happen, and why it matters so much for family planning, pregnancy and fertility.

The panel explores:

• How and when screening happens across the UK’s NHS — including newborn, antenatal and adult testing
• Why knowing your genotype or carrier status early can make a critical difference towards informed choice
• Barriers to accessing testing, particularly in areas of low prevalence
• Inequalities in screening, GP awareness, and regional services
• The emotional and cultural stigma that still surrounds genetic testing
• Fertility options, including IVF, genetic counselling, and pre-implantation genetic testing
• Why men are often under-represented in pre-conception testing — and how that can change 

Drawing on both professional expertise and personal stories, the conversation examines how screening pathways have evolved since the 1990s and how they operate today. The panel explores this important topic in depth, sharing insights relevant to patients, families and professionals alike. 

 This episode is produced in collaboration with the UK Thalassaemia Society, and is  funded by the Society’s NHS Sickle Cell & Thalassaemia Screening Engagement Project commissioned by NHS England.

@SickleCellUK
https://www.sicklecellsociety.org/
Charity no. 1046631