Educational resources for men experiencing sickle cell disorder and an associated condition called priapism which have been published today and we thought would be of interest to your members and you may wish to share across your communication channels.
Priapism are long lasting painful erections which, if left untreated, can permanently damage erectile tissue. Priapism is a common issue for young men with sickle cell and can affect up to 50% of them: unsurprisingly, it is not openly spoken about. A related concern is the mental health of men suffering from this embarrassing condition.
Boston Scientific has partnered with the Sickle Cell Society and Guy & St Thomas’ Hospital in London to create a video about symptoms, guidance on going to hospital, and other resources such as infographics. The key message from the education materials is to get prompt treatment from the hospital for prolonged erections to reduce the risk of permanent erectile damage.
Dr Subarna Chakravorty is a Paediatric Haematologist with a special interest in non-malignant haematology and stem cell transplant for haemoglobinopathy and non-malignant diseases. She joined King’s College Hospital as consultant in July 2015. Prior to that, Subarna led the Paediatric Haemoglobinopathy service at Imperial College Healthcare NHS Trust and the Imperial Paediatric Red Cell Disorders Network for 5 years, where she was also involved in the bone marrow transplant programme for paediatric haemoglobinopathy. Since 2021, Subarna has been involved in the adult sickle cell bone marrow transplant service at King’s College Hospital.
I have accumulated over 40 years of experience in the fields of transfusion science and clinical transfusion. Qualifying in 1984 as a registered Biomedical Scientist while working for NHS Blood and Transplant, I later took on the management of the Transfusion Laboratory at Oldchurch Hospital before finally moving to North Middlesex University Hospital NHS Trust in the early 1990s. It is here that I became interested in the transfusion needs of patients with inherited red cell disorders. Thanks to the support and encouragement of Dr Anne Yardumian, the Red Cell Consultant Lead, I had the opportunity to become more deeply involved in an expanded patient-facing role, supporting the wider clinical needs of transfusion-dependent patients beyond ensuring the delivery of the right blood to the right patient.
Dr Rachel Kesse-Adu is a consultant haematologist who qualified in medicine from Imperial College School of Medicine in 2002 and completed her specialist training in haematology at Kings College Hospital in London in 2012. 
Dr Jo Howard is a Consultant Haematologist at Guy’s and St Thomas’ NHS Foundation Trust, London, UK, and Honorary Professor in Haemoglobinopathies at King’s College London. She is lead for the adult haemoglobinopathy service with responsibility for more than 700 patients, the majority of whom have sickle cell disease. She is network lead for the South Thames Sickle Cell and Thalassaemia
Dr Paul Telfer is clinical lead for Haemoglobinopathy services at Bart’s Health NHS Trust and the East London and Essex Clinical
John James OBE has 33 years of experience within the NHS including 4 CEO roles. He was Chair of the West London Cancer network (2002-2005) and Chair of the North West London Diabetes Network (2003-2004). 
Dr Farrukh Shah, Consultant haematologist, expert in management of thalassaemia syndromes, transfusion and non-transfusion dependent and has a specialist interest in management of iron overload. Dr Farrukh runs joint clinics with the diabetes team and has a good grasp of endocrine complications affecting patients with iron overload. She looks after patients with sickle cell disease and other rare inherited anaemias as part of his routine practice.
Baba Inusa graduated MBBS 1984, ABU Zaria, Nigeria. He is a Professor of Paediatric Haematology, King’s College London and Lead Consultant Paediatric Haemoglobinopathies, Evelina London Children’s Hospital, Guy’s and St Thomas NHS Foundation Trust. He is also a mentor, supervising PhD and Masters students at King’s College London, receiving students from Italy, China and the Middle East.
Living with a rare genetic condition herself, Roanna Maharaj is a seasoned patient advocate who believes the patient’s voice needs to be included throughout the continuum of care from preventative medicine to potentially curative therapies. She is passionate about addressing the health inequities facing her community and believes in supporting health care professionals to provide consistent and quality care throughout the United Kingdom.