Priapism and what to do if you experience it
Priapism Some boys with sickle cell can get a painful swelling of the penis. This is called priapism. It can sometimes get better on its own, and things like drinking […]
Managing Pain
This video shares powerful personal stories about living with sickle cell and offers practical insight into managing pain. It highlights real experiences, explores common challenges, and provides supportive guidance on […]
How a Sickle Crisis Presents
The video on how a sickle crisis presents explains the typical signs and symptoms of a sickle cell pain crisis, showing how it can begin suddenly, escalate quickly, and require […]
Patient Public Voice (PPV) Group Application form
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Being Heard – Haemoglobinopathy Coordinating Centre
This video highlights the importance of listening to the voices and experiences of people living with haemoglobin disorders. It focuses on patient stories, support services, and how the HCC is […]
Apply Now! 2025 Sickle Cell Family Retreat
Friday – Saturday 29th – 31st August 2025 – WHITEMOOR LAKES
Terminology
Abbreviation Full Term Details BMT Bone Marrow Transplant Bone marrow transplant, also known as ‘stem cell transplant’ or ‘haematopoietic stem cell transplant’, can offer a potential cure for Sickle Cell […]
Free Regional Sickle Cell Disorder (SCD) Patient Event
Saturday 21st June 2025 – 10:00 – 16:30 – SHEFFIELD
Exercise for Sickle Cell patients
Supporting Healthy Movement and Physical Development for People with Sickle Cell Disorder Being active and moving your body regularly can help you stay healthy, strong, and feel good. For people […]
Emma Pullia
Patient Representative Support Office, MDT Co-Ordinator and Data Manager