What Is Sickle Cell Disease? Everything You Need to Know (and How to Help)
Published in recognition of World Sickle Cell Day on June 19
Every year on June 19, World Sickle Cell Day helps raise awareness of sickle cell disease, also known as sickle cell disorder in the UK. It is an inherited blood condition that affects millions of people around the world. In the UK, approximately 17,500 people are living with sickle cell disorder, according to the Sickle Cell Society.
Sickle cell disease has historically received less public attention and research funding than its impact warrants. Whether you’re learning about it for the first time or looking for ways to help, here’s what to know.
What is sickle cell disease?
Sickle cell disease, sometimes called sickle cell disorder in the UK, is an inherited blood condition that affects red blood cells. Red blood cells are usually round and flexible, which helps them move through blood vessels and carry oxygen throughout the body. In people with sickle cell disease, some red blood cells become hard, sticky, and shaped like a crescent, or sickle.
These cells can get stuck in blood vessels, blocking blood flow and preventing oxygen from reaching organs and tissues. They also break down much earlier than healthy red blood cells, which can lead to anaemia, fatigue, pain, and other complications over time.
Sickle cell disease is genetic. A person is born with SCD when they inherit two sickle haemoglobin genes, one from each parent. It is not contagious.
What are the symptoms of sickle cell disease?
Sickle cell disease affects people differently. Common symptoms and complications can include:
- Chronic pain, caused by sickled cells blocking blood flow.
- Anaemia, which can cause fatigue, weakness, and shortness of breath.
- Swelling of the hands and feet, often one of the first signs in infants.
- Frequent infections, which can happen when sickle cell disease damages the spleen.
- Delayed growth in children.
- Vision problems caused by blocked blood vessels in the eye.
- Stroke, which can happen when sickled cells block blood flow to the brain.
Many people with SCD experience painful episodes called sickle cell crises. These episodes can last for hours or days and may require hospital care. Triggers can include cold temperatures, dehydration, stress, or illness.
What causes sickle cell disease?
Sickle cell disease is caused by a change in the gene that helps the body make haemoglobin, the protein in red blood cells that carries oxygen. This gene change produces haemoglobin S, also called HbS. HbS can cause red blood cells to become hard, sticky, and sickle shaped. These cells break down much earlier than normal and can block blood flow, causing pain and organ damage.
To have SCD, a child must inherit the HbS gene from both parents. If a child inherits the gene from only one parent, they have what is called sickle cell trait. People with sickle cell trait usually do not have symptoms of SCD, but they can pass the gene to their children.
SCD is more common in people with ancestry from:
- Sub-Saharan Africa
- South Asia
- The Middle East
- The Mediterranean
Sickle cell disease can affect people of any background. These regions have higher prevalence in part because the sickle cell trait offered some protection against severe malaria in affected areas.
In the UK, almost 300 babies are born with sickle cell disorder each year, according to the Sickle Cell Society’s latest factsheet.
How is sickle cell disease treated?
Treatment for sickle cell disease has improved in recent years, but care can still be complex and costly. Treatment depends on a person’s age, symptoms, health history, and access to specialised care.
Most care focuses on reducing pain, preventing infections and complications, treating anaemia, and helping people manage daily life with the condition. Treatment may include medication, pain management, blood transfusions, stem cell transplant, or gene therapy.
1. Medication for sickle cell disease
Hydroxycarbamide, also known as hydroxyurea, is one of the most widely used medications for sickle cell disease in the UK. It can help reduce painful crises, lower the need for blood transfusions, and reduce the risk of some complications. It works by helping the body produce more foetal haemoglobin, a type of haemoglobin that does not sickle in the same way.
Crizanlizumab is another medication used for some people with sickle cell disease. It helps reduce how often pain crises happen by making it harder for blood cells to stick to blood vessel walls. Availability and prescribing guidance can vary, so people should talk with their care team about whether it may be an option.
Voxelotor, sold under the brand name Oxbryta, was previously used to treat sickle cell disease. Pfizer voluntarily withdrew it from markets worldwide in September 2024 after determining that its benefits no longer outweighed its risks for the approved patient population.
Pain management is also an important part of care. During a sickle cell crisis, treatment may include pain relief medication, fluids, oxygen, or hospital care, depending on the person’s symptoms and medical needs.
2. Other treatments for sickle cell disease
Blood transfusions can help treat severe anaemia, reduce the risk of stroke, and manage serious complications. People with sickle cell disease often need specially matched blood for transfusions.
A stem cell transplant, also called a bone marrow transplant, is a potential cure for some people with sickle cell disease. It requires a well-matched donor and can carry serious risks, so it is only an option for some patients.
Gene therapy is also becoming part of sickle cell disease care for certain patients. In England, NICE has recommended Casgevy, also known as exagamglogene autotemcel or exa-cel, under managed access for some people aged 12 and over with severe sickle cell disease who meet specific eligibility criteria.
These treatments are important advances, but they are not available or appropriate for everyone. They require specialised care and can involve significant medical risks and costs.
Medical information in this article is for educational purposes only and is not medical advice. Anyone living with sickle cell disease should talk with a qualified healthcare professional about their care options.
A note on blood donation in the UK
People with sickle cell disease who need regular blood transfusions often benefit from Ro subtype blood, which is more common in people from Black African and Black Caribbean backgrounds. According to NHS Blood and Transplant, only around 3% of regular blood donors have Ro blood, while approximately 47% of Black heritage donors carry the Ro subtype.
If you have Black African or Black Caribbean heritage, donating blood could make a meaningful difference for someone living with sickle cell disease. You can learn more through NHS Blood Donation.
Who does sickle cell disease affect?
Sickle cell disease is a global condition. It disproportionately affects people of African, South Asian, Middle Eastern, and Mediterranean ancestry, but it can affect people of any background. Nearly 8 million people are living with sickle cell disease around the world, according to the WHO. In the UK, the Sickle Cell Society estimates that around 17,500 people are currently living with sickle cell disorder.
Despite its impact, sickle cell disease has historically received less research funding and public attention than many advocates believe it deserves. People living with SCD, their families, healthcare professionals, researchers, and community organisations continue working to improve care, expand access, and support more treatment options.
How you can help through GoFundMe
People and communities across the UK are raising money on GoFundMe to support sickle cell awareness, advocacy, practical care, and community support. Before donating, visit each fundraiser page directly for the latest details, current status, and organiser updates.
- Goals for Good: sickle cell fundraiser
Daniel Ayeni has lived with sickle cell anaemia since birth. His fundraiser shares that blood clots previously left him hospitalised and temporarily unable to walk. Now recovered, he is organising a series of 5-a-side football tournaments at his school to raise awareness and funds for the Sickle Cell Society. The fundraiser connects sport, community, and personal experience to support one of the leading national sickle cell charities in the UK. - World Sickle Cell Day
Organised from England by Sandra Osokogun and Millicent Omoroje, this fundraiser supports the Audrey Sickle Cell Foundation’s World Sickle Cell Day awareness campaign in Nigeria, a country with one of the world’s highest burdens of sickle cell disease. Funds are being raised to help provide awareness materials, community outreach, educational resources, and routine medication support for people who may not otherwise be able to afford it. The fundraiser is a reminder that sickle cell disease is a global condition, and that support from the UK can reach communities beyond borders. - Care, hope, and support for sickle cell families
Organised from England by S.C Warriors Hub, this fundraiser provides direct, practical support to people living with sickle cell disease and their families. Funds go towards mental health support, emergency assistance, medication and healthcare costs, transport to hospital appointments, food, and basic necessities during recovery. The fundraiser focuses on helping people access support when a crisis creates added pressure. - Berlin Rollerblading Marathon for Sickle Cell Society
William Kay, based in Scotland, is taking on the Berlin Rollerblading Marathon in September to raise funds for the Sickle Cell Society. His fundraiser turns a solo endurance challenge into a way to support awareness, advocacy, and community services for people affected by sickle cell disease in the UK.
Organisations supporting people with sickle cell disease in the UK
- Sickle Cell Society
The Sickle Cell Society is the only national charity in the UK that supports and represents people affected by sickle cell disorder. Founded in 1979, the charity works to improve quality of life for people living with the condition through information, welfare support, advocacy, research, and education for healthcare professionals. The Sickle Cell Society also provides guidance for individuals, families, carers, and healthcare teams, making it an important resource for anyone looking to learn more about sickle cell disorder in the UK. - NHS sickle cell disease information
The NHS provides medically reviewed patient information on sickle cell disease, including symptoms, causes, diagnosis, treatment, and living with the condition. For people in the UK, NHS guidance is one of the first places to go for reliable medical information and next steps.
Final words
Sickle cell disease affects millions of people around the world, including thousands of people in the UK. The people, families, and communities living with it deserve more awareness, more support, and more access to compassionate care. World Sickle Cell Day on June 19 is one chance to help.
You can donate, share a fundraiser, register as a blood donor, or take time to learn more. Every act of support matters.
Sources and further reading
For medically reviewed information about sickle cell disease, visit:
| Organisation | Resource | Link |
|---|---|---|
| World Health Organization (WHO) | Sickle Cell Disease Fact Sheet | who.int |
| NHS | Sickle Cell Disease — Overview | nhs.uk |
| NICE | Casgevy for treating sickle cell disease | nice.org.uk |
| Sickle Cell Society | About Sickle Cell Disorder | sicklecellsociety.org |
| NHS Blood and Transplant | Sickle Cell and Blood Donation | nhsbt.nhs.uk |
| British Society for Haematology | Sickle Cell Clinical Guidelines | b-s-h.org.uk |
Medical information in this article is for educational purposes only. Always consult a qualified healthcare professional for medical advice, diagnosis, or treatment.