Sickle Cell Society

The Sickle Cell Society is the only national charity in the UK that supports and represents people affected by a sickle cell disorder to improve their overall quality of life. First set up as a registered charity in 1979, the Sickle Cell Society has been working alongside health care professionals, parents, and people living with sickle cell to raise awareness of the disorder. The Society’s aim is to support those living with sickle cell, empowering them to achieve their full potential.

Sickle cell disorder is a long term inherited condition that causes excruciating pain, can be life threatening, causes multiple problems such as specific severe infections, strokes, chronic fatigue, delayed growth and progressive tissue and organ damage. People are often admitted to hospital when they have a sickle cell crisis, given strong pain killers such as morphine to control the pain, intravenous therapy and antibiotics.  Some require regular blood transfusions to help reduce the number of sickle cell crisis as well as prevent life-threatening problems.

• SCD is inherited from both parents; sickle cell trait is inherited from one parent.
• SCD mostly, but not exclusively affects people from African and Caribbean backgrounds
• 1 in 76 babies born in the UK carry sickle cell trait.
• Approximately 15,000 people in the UK have sickle cell disorder.
• Approximately 350 babies with SCD are born in the UK every year.
• A simple blood test will tell whether you have sickle cell trait or the disorder
• Children with SCD are at increased risk for stroke, the risk is highest between the ages of 2 and 16.
• Episodes of pain may occur in sickle cell disorder and are generally referred to as a crisis