Sickle Cell Disease (SCD) is a genetic blood disorder; this means blood cells are sickle shaped (like a half a moon) instead of round shaped. When they are sickle shaped it is harder for the cells to move around the body and so they get stuck, causing pain.
You cannot ‘catch’ sickle cell disease, the gene is passed on if both parents carry the gene. Sickle cell disease is particularly common in people with an African or Caribbean family background.
Early detection of SCD can save lives. Sickle cell disease is typically diagnosed at birth through routine newborn screening tests. In some cases, it can also be identified before birth using genetic testing methods.
Sickle cell disease is estimated to affect 1 in every 2000 live births in England. As such it is one of the most common genetic conditions affecting people in England – NICE January 2025
A Sickle Cell Crisis is when the blood cells clog small blood vessels in the body, these can lead to many complications including chest infections, stroke and kidney problems. You can read what triggers a crisis here: Body | Crisis Control
The best way to avoid a ‘pain crisis’ is to:
- Take your medication as directed
- Avoid extreme temperatures
- Drink a lot of water
- Rest
- Listen to your body when you start to feel unwell
Living with SCD can be challenging, not just physically but also emotionally and mentally. A pain crisis will disrupt daily life, school, work, and social activities, leading to stress, anxiety, and depression. There are ways to access mental health support from your GP or haematology team. Read about Sickle cell and Mental Health here: Sickle Cell Disease / Anaemia and Mental Health
There is no cure for SCD but it does require lifelong treatment. For people with SCD everyday can be a battle, but with proper care, many people lead a healthy and meaningful life. Click for treatment options here: Sickle cell disease – Treatment – NHS
Resource Links for Young People:
- Home – Sickle Cell Society
- Information for Children | Crisis Control
- Empowering Young People with Sickle Cell: The Sickle Cell Society’s Peer Mentoring Programme – NHS Innovation Accelerator
- NHS England » Podcast: sickle cell in children and young people
Resource Links for Adults:
- Sickle cell disease – NHS
- Ageing Well with Sickle Cell
- The Sickle Cell Society Podcast – Sickle Cell Society
- Information for Adults | Crisis Control
