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. It is an inherited blood condition that affects millions of people around the world. In Ireland, approximately 800 people are living with sickle cell disease, according to RTÉ reporting published for World Sickle Cell Day. Despite this, 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 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 sickle cell disease 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 sickle cell disease 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 sickle cell disease, 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, but they can pass the gene to their children.
Sickle cell disease 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 Ireland, the number of people living with sickle cell disease has grown over time. A Seanad debate on sickle cell disease noted that 20 children were undergoing treatment in Ireland in 2000, compared with 385 children attending the service at Children’s Health Ireland in 2021.
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.
In Ireland, specialist paediatric care is provided at Children’s Health Ireland (CHI) at Crumlin, which treats and manages red cell and haemoglobin disorders and works with other specialist teams. Adult specialist care is provided at St James’s Hospital in Dublin, the only specialist adult service for sickle cell disease in Ireland, according to the Medical Independent. The HSE is currently developing a national model of care for people with haemoglobinopathies, including sickle cell disease.
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.
Medication for sickle cell disease
Hydroxycarbamide, also known as hydroxyurea, is one of the most widely used medications for sickle cell disease. 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.
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. Casgevy, also known as exagamglogene autotemcel or exa-cel, received conditional approval from the European Medicines Agency in 2024. In Ireland, access to new medicines is assessed by the HSE through its reimbursement process. People interested in whether Casgevy may be relevant to their care should speak with their specialist team.
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 speak with a qualified healthcare professional about their care options.
A note on blood donation in Ireland
People with sickle cell disease who need regular blood transfusions often benefit from specially matched blood. In Ireland, the Irish Blood Transfusion Service has called for more donors of African ancestry, noting that African heritage donors are 10 times more likely to have the Ro blood type urgently needed to treat people with sickle cell disease.
If you are of African or Caribbean heritage and in good health, donating blood through the Irish Blood Transfusion Service could make a meaningful difference for someone living with sickle cell disease in Ireland. You can register and find your nearest clinic at giveblood.ie.
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 Ireland, sickle cell disease is classified as a rare disease under EU frameworks. That reflects the smaller patient population compared with larger European countries, not the seriousness or impact of the condition. Advocates, clinicians, and community organisations have called for a dedicated national model of care, improved access to specialist services, and greater awareness among healthcare workers, schools, and the general public.
Families have described encountering healthcare workers unfamiliar with the condition, and patients have reported feeling unheard within a system still catching up with the scale of need, according to RTÉ reporting from June 2025.
How you can help from Ireland
There may not always be active Ireland-based GoFundMe fundraisers for sickle cell disease. If you’re in Ireland and want to support people affected by sickle cell disease, there are still meaningful ways to help.
1. Support blood donation awareness
People with sickle cell disease who need regular transfusions often benefit from specially matched blood. In Ireland, the Irish Blood Transfusion Service works with community partners to encourage more donors from African and Caribbean communities, whose blood may be a closer match for people living with sickle cell disease.
You can help by learning more about blood donation, sharing trusted information, or registering to donate if you’re eligible.
2. Support local education and advocacy
Irish organisations and community groups are working to raise awareness of sickle cell disease, support families, and improve understanding among schools, healthcare workers, and the wider public.
Sharing reliable information, attending community events, or supporting awareness campaigns can help more people understand the condition and the care needs of people living with it.
Start a fundraiser for sickle cell support
If you’re part of a school, workplace, faith group, sports club, or local community, you can start a GoFundMe to raise money for sickle cell awareness, education, blood donation outreach, or support for families affected by the condition.
You could fundraise for a local organisation, support an awareness event, help cover practical needs for a family, or raise money for a trusted sickle cell charity. Before you start, make sure you’re clear about who the fundraiser will support, how donations will be used, and whether you need permission from the person or organisation you’re fundraising for.
Support international fundraisers through GoFundMe
Sickle cell disease is a global condition, and some fundraisers organised outside Ireland may support communities with high rates of the disease. Before donating, visit each fundraiser page directly for the latest details, current status, and organiser updates.
Organisations supporting people with sickle cell disease in Ireland
- Sickle Cell Society Ireland (SCSI)
Sickle Cell Society Ireland, also known as SCSI, is an umbrella organisation for sickle cell support groups in Ireland. It is a patient- and parent-led NGO working at local, regional, national, and European Union levels to support people and families affected by sickle cell disease.
Its work includes parent support, advocacy, public awareness, educational workshops, and community outreach programmes. SCSI states it has visited more than 30 schools, libraries, faith-based groups, community organisations, and hospitals in Dublin, reaching about 2,500 people through awareness work. The organisation also works in partnership with groups including the Sickle Cell Society UK, the Irish Blood Transfusion Service, and Children’s Health Ireland at Crumlin. - Sickle Cell and Thalassaemia Ireland (SCTI)
Sickle Cell and Thalassaemia Ireland, also known as SCTI, is a patient- and family-led organisation raising awareness and support for people affected by sickle cell disease and thalassaemia across Ireland. Its work includes educational workshops, seminars, media outreach, printed information, genetic screening promotion, and public policy advocacy.
SCTI also works on Red4SickleCell, a blood donation awareness initiative focused on the need for more donors of African heritage in Ireland. The initiative supports education about the need for more blood donors of African and Asian heritage living in the Republic of Ireland. - Children’s Health Ireland (CHI) at Crumlin
Children’s Health Ireland at Crumlin provides specialist paediatric haematology care, including diagnostic, treatment, and management services for red cell and haemoglobin disorders. Its haematology team works closely with other specialist teams at Crumlin and provides an advisory service for clinicians in Ireland.
For children with sickle cell disease in Ireland, Children’s Health Ireland at Crumlin is an important specialist care provider. The hospital also treats children on chronic blood transfusion programmes, including children with sickle cell disease and thalassaemia. - St James’s Hospital, Dublin
St James’s Hospital in Dublin provides a dedicated sickle cell disease and thalassaemia service, also known as a haemoglobinopathy service. The service provides specialist support for adults living with sickle cell disease and thalassaemia.
St James’s has also been reported as Ireland’s only specialist service for adults with sickle cell disease. For adults living with the condition, it is a key service for haematology care, transfusion support, and ongoing management.
Final words
Sickle cell disease affects millions of people around the world, including a growing community here in Ireland. 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 share trusted information, support local organisations, register as a blood donor with the Irish Blood Transfusion Service, or take time to learn more.
Every act of support matters.
Sources and further reading
| Organisation | Resource | Link |
|---|---|---|
| World Health Organization (WHO) | Sickle Cell Disease Fact Sheet | who.int |
| HSE | Sickle Cell Disease — Health A–Z | hse.ie |
| Sickle Cell Society Ireland | About Sickle Cell | sicklecellsociety.ie |
| Sickle Cell and Thalassaemia Ireland | Red4SickleCell Blood Donation | sicklecellireland.ie |
| Irish Blood Transfusion Service | Donate Blood | giveblood.ie |
| Children’s Health Ireland | Haematology Services | childrenshealthireland.ie |
| European Medicines Agency (EMA) | Casgevy — Product Information | ema.europa.eu |
Medical information in this article is for educational purposes only. Always consult a qualified healthcare professional for medical advice, diagnosis, or treatment.