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

When we asked the sickle cell community about their ‘private life’ and sickle cell, it was clear that dating and relationships were providing for some challenging times and difficult conversations.

Our host, Kesewaa Browne, asked our panel about their experiences of navigating their love life with sickle cell disorder. The discussion covers looking for love, relationships, situationships and settled long term commitment. They get into the highs and lows and challenge of it all, but they all agree on what good love, with sickle cell as third wheel, looks like!

We hope you find the discussion helpful, and perhaps find new ways to open some of the challenging conversations needed to navigate through your own love life. It might also be helpful to see that others are going through the exact same challenges as you.

Panel members :
Gildé Nsianguana
Bolaji Farinto
Michael Dove

The panel discuss their own experiences of health conditions and sickle cell treatments during this episode. Please note :

The views expressed by our guests are their own personal opinions and experiences. This is not intended to be medical advice. Please consult your medical team before making any changes to your sickle cell treatment plan

Kesewaa Browne is a multiplatform Journalist for the BBC, and Assistant Producer and Sport Presenter at Riverside Radio. Kesewaa has produced a BBC documentary about sickle cell disorder and is passionate about raising the profile of the condition.

Further Information:

Watch our animated Priapism video : https://bit.ly/3CwC1Vn

Find additional resources about priapism : www.sicklecellsociety.org/priapism/

Learn more about sickle cell screening and testing : www.sicklecellsociety.org/screeningprogramme/

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

We asked the sickle cell community to send us their burning questions about their intimate life, family planning and sickle cell. The response was clear - you wanted to hear more about :

- Starting a family while taking hydroxycarbomide
- Priapism
- Fertility and pre pregnancy care and support
- Risks, medications, care and support during pregnancy and while breastfeeding
- Pregnancy and birth with avascular necrosis of the hip
- Pain and stress caused by intimacy

So we created this podcast episode to answer your questions, share knowledge about the above, and more, and to let you know that you're not alone - others share your concerns, and there are specialists out there who can help and support you.

We also delved into IVF and pre implantation genetic testing for people with sickle cell, and how to get this treatment for free.

Use the information in this episode to start conversations with your healthcare team, and get any help and support you need.

In this episode, host Kesewaa Browne is joined by Professor Eugene Oteng-Ntim, a Consultant Obstetrician with over 30 years of experience in the field.

As an expert in antenatal and postnatal care, Eugene delivers maternity services to women on every level of the health spectrum, and has specialist knowledge in caring for patients who live with sickle cell disorder.

He is head of Obstetrics at Guy’s and St Thomas’ Hospitals in London, and Clinical Director for Women’s Health Services. Eugene is also Professor of Obstetrics at King’s College London.

Professor Eugene became the first black Professor at Guy’s and St Thomas’ Hospital and the first black Professor of Obstetrics at Kings College, London.

Kesewaa Browne is multiplatform Journalist for the BBC, and Assistant Producer and Sport Presenter at Riverside Radio. Kesewaa has produced a BBC documentary about sickle cell disorder and is passionate about raising the profile of the condition.

We hope you enjoy this episode and learn more about some important topics, which are sometimes a challenge to bring up or discuss with others. Make sure you let us have your feedback, so we can create more of the content you want to see.

For more information:

Watch our animated Priapism video on YouTube : https://bit.ly/3CwC1Vn

Find additional resources about priapism : www.sicklecellsociety.org/priapism/

Learn more about sickle cell screening and testing : www.sicklecellsociety.org/screeningprogramme/

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

This episode generates a discussion between health care professionals and patients about how to get the best out of the transition from child to adult sickle cell services. This period can last from age 12 and last a decade, depending on needs, so there's a lot to unpack.

Led by host, Kesewaa Browne, the panel exchange experiences and share insights from their clinics and lived experience, and offer tips for young patients and parents to communicate effectively with their doctors for a better transition experience.

Host : Kesewaa Browne, multiplatform Journalist for the BBC, Assistant Producer and Sport Presenter at Riverside Radio. Kesewaa has produced a BBC documentary about sickle cell disorder and is passionate about raising the profile of the condition.

Clinical panel members :

Samah Babiker - Paediatric Haematology Consultant , Guys and St Thomas NHS Foundation Trust and Evelina London Children’s Hospital

Martin Besser - Consultant Haematologist, Cambridge University Hospitals NHS Foundation Trust

Eliane Young – Consultant Clinical Psychologist, Cambridge University Hospitals NHS Foundation Trust

Patient panel members :

Michael Dove

Bolaji Farinto

The panel delve into patient experiences, and how clinicians are working on addressing issues and creating a smooth process. They discuss the young brain and how parents can support their children as they navigate transition alongside other challenges of growing up and developing into independent adults. They look at the wider family and how they can open helpful conversations to support the transition period, tips for choosing a university while living with sickle cell, emotional wellbeing, and what else hospitals can do to make the process easier.

We make no apology for a longer than usual podcast, because it is packed with insights and help for anyone involved in the process of transition to adult sickle cell care.

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.

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