What is Sickle Cell Disorder?
Understanding sickle cell disease, how it can affect people and where to find trusted information and support.
What is sickle cell disease?
Sickle cell disease is the name for a group of inherited conditions that affect haemoglobin, the substance in red blood cells that carries oxygen around the body.
Some red blood cells can become sickle-shaped, rigid and less able to move through small blood vessels. This can cause episodes of pain and other health problems.
Sickle cell disease affects people differently. With specialist care and support, many people can manage their health and lead fulfilling lives.
Read more on the NHS website
How can sickle cell affect someone?
Symptoms vary from person to person. Some people have more frequent or more serious symptoms than others.
Episodes of pain
Painful episodes, often called sickle cell crises, can occur when sickled cells restrict blood flow.
Tiredness and anaemia
Red blood cells can break down more quickly than usual, causing anaemia and tiredness.
Infections and complications
People with sickle cell disease have an increased risk of infections and may develop other complications. Regular specialist care is important.
When to seek urgent medical help
Sickle cell disease can cause serious complications. Follow your individual care plan and seek urgent medical advice if you or your child has:
- A temperature of 38°C or above, or feels very unwell.
- Pain that is not controlled by your usual treatment at home.
- Chest pain, shortness of breath or difficulty breathing.
- Sudden weakness, a facial droop, difficulty speaking or another possible sign of a stroke.
Call 999 for severe breathing difficulty, suspected stroke or another life-threatening emergency.
For other urgent concerns, contact your specialist sickle cell team immediately, follow your care plan or seek urgent NHS advice. Do not delay seeking help if you are seriously concerned.
Tell the healthcare team that you or your child has sickle cell disease.
How is sickle cell inherited?
Sickle cell disease is inherited through genes passed from biological parents to their children. It is not contagious: you cannot catch it from another person.
A person who carries one sickle cell gene is described as having sickle cell trait. They do not have sickle cell disease, but they may pass the gene to a child.
If you would like to know whether you carry the gene, speak to your GP about a blood test. A healthcare professional can explain the results and any implications for family planning.
Learn about sickle cell traitScreening in pregnancy and after birth
Sickle cell screening is offered during pregnancy. It is your choice whether to have screening. Speak to your midwife or GP about what is available and how to request a test.
Sickle cell disease can also be identified through newborn blood spot screening.
Living well with sickle cell disease.
People with sickle cell disease are usually supported by a specialist healthcare team. Treatment is based on the individual’s needs.
Regular care
Check-ups and an individual care plan help your healthcare team monitor your health and discuss treatment or support.
Treatment options
Depending on your circumstances, care may include pain relief, medicines to reduce complications, vaccinations or blood transfusions.
Everyday wellbeing
Discuss hydration, activity, keeping warm and other practical steps with your healthcare team. Follow advice that is right for you.
Some treatments, including stem cell or bone marrow transplants and gene therapy, may be suitable for some people. A specialist team can explain the benefits and risks.
Resources and support.
These resources provide further information for individuals, families and carers.
- NHS: Sickle cell disease
- NHS: Screening for sickle cell and thalassaemia
- Sickle Cell Society: Information and support
- NHS Blood and Transplant: Give blood
This page provides general information. It does not replace advice from your GP or specialist healthcare team.
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