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