What is Sickle Cell Disease
Sickle Cell Disease (SCD) is a genetic blood disorder that changes the shape and behaviour of your red blood cells. Normally, these cells are round and flexible, moving smoothly through your blood vessels to carry oxygen to every part of your body. But in people with SCD, some red blood cells become hard, sticky, and shaped like a sickle (like a crescent moon).
These sickle-shaped cells can get stuck in small blood vessels, which blocks blood flow and causesThis test checks if you carry the sickle cell gene, which is especially important if both parents are carriers, as there's a chance the baby could inherit SCD. and other health problems. SCD is inherited, meaning you’re born with it if both your parents pass down the faulty gene.
What is Causes Cell Disease
SCD is caused by a small genetic mutation that affects the gene responsible for making haemoglobin the part of red blood cells that carries oxygen. This mutation causes the haemoglobin to behave differently, making red blood cells stiff and sickle-shaped.
To develop SCD, a person must inherit the faulty gene from both parents. If the gene is inherited from just one parent, the person has sickle cell trait, which usually doesn’t cause symptoms but can be passed on to children.In the UK, about 15,000 people live with SCD, and around 270 babies are born with it each year. (NHS, 2024)
Screening for Sickle Cell Disease Before and During Pregnancy
If you're planning to have a baby or are already pregnant, screening for sickle cell is an important step. The NHS offers free screening tests for all expectant mothers as part of routine prenatal care. This test checks if you carry the sickle cell gene, which is especially important if both parents are carriers, as there's a chance the baby could inherit SCD.
For couples planning a pregnancy, pre-pregnancy screening is available through your GP or local health clinic. Knowing your carrier status early gives you more options, including:
-
In vitro fertilisation (IVF) with genetic testing to select embryos without SCD.
-
Pre-implantation genetic diagnosis (PGD), available through the NHS in certain cases, to help reduce the risk of passing on SCD.
If both parents are found to be carriers, further testing during pregnancy can help determine whether the baby has sickle cell disease. Options include chorionic villus sampling (CVS) or amniocentesis, which involve testing a small sample of the baby’s cells. Knowing early can help parents prepare for care and treatment, and healthcare providers can monitor the baby closely before and after birth.
Early diagnosis through screening ensures that babies born with SCD receive the best possible care right from the start, including early treatments to prevent complications and infections.
How Does Sickle Cell Disease Affect the Body?
SCD affects people differently, but common symptoms and complications include:
Pain episodes (sickle cell crises): Sudden, severe pain, often in the chest, back, arms, or legs. This happens when sickle cells block blood flow.
Anaemia:
Sickle cells don’t last as long as normal red blood cells, causing a shortage. This leads to fatigue, weakness, and shortness of breath.
Infections:
The spleen, which helps fight infections, can become damaged, making people with SCD more prone to infections.
Jaundice: Yellowing of the skin and eyes due to the breakdown of sickle cells.
Swelling in hands and feet: Caused by blocked blood flow in smaller vessels.
Over time, SCD can also cause serious complications, such as organ damage, stroke, vision problems, and acute chest syndrome.
Sickle Cell Disease and Chronic Inflammation
SCD isn’t just about misshapen blood cells it’s also considered a chronic inflammatory disease (PMC). The sickling process damages blood vessels and triggers ongoing inflammation in the body. Here’s how:
-
Blocked Blood Flow: Sickled cells clog small blood vessels, reducing oxygen flow to tissues and causing pain and damage.
-
Increased Cell Stickiness: Damaged blood vessel walls cause cells like platelets and white blood cells to stick more, worsening blockages.
-
Chronic Inflammation: The breakdown of sickled cells releases free haemoglobin, which reduces nitric oxide (NO). NO helps blood vessels relax, so without enough of it, blood vessels stay tight, increasing the risk of pain and organ damage.
Being aware of this chronic inflammation is important because it affects not just physical health but also how the body responds to treatment. Managing inflammation through medication, healthy lifestyle choices, and regular check-ups can help reduce long-term complications.
Living with Sickle Cell Disease
Living with SCD means managing more than just physical symptoms. It can affect many parts of your life, from your emotional wellbeing to your daily activities and relationships.
The Sickle Cell World Assessment Survey (SWAY) conducted in 2020, found that, 69% of people with SCD reported that it significantly affects their emotional wellbeing . Another study in 2017 found that more than a third of adults with SCD experienced depression, showing just how much the condition affects mental health (Depression in SCD, 2017). Many people also face challenges at work due to fatigue, frequent hospital visits, or pain crises. Some even report feeling misunderstood by healthcare professionals or experiencing stigma in social situations.
Despite these challenges, many people with SCD live full, active lives by learning to manage their symptoms, seeking support, and staying informed about their condition.
Support for People Living with Sickle Cell Disease
Living with SCD can be challenging, but there are resources and support systems available to help you manage.
-
Benefits and Financial Support: You may be eligible for benefits such as Personal Independence Payment (PIP), Disability Living Allowance (DLA) for children, and Carer’s Allowance if you care for someone with SCD. These benefits help with the additional costs of living with a chronic condition.
-
The Freedom Pass provides free travel across London’s public transport network for eligible disabled individuals, including those with Sickle Cell Disease who meet the criteria. It helps improve mobility and independence by allowing free travel on buses, trains, trams, and the Tube. For more information and to check eligibility, visit: London Councils - Freedom Pass
-
Workplace Support: Employers in the UK are required by law to make reasonable adjustments for employees with SCD. This could include flexible working hours, remote work options, or providing more breaks during the day (GOV.UK)
-
Accessing Healthcare: Regular check-ups, free prescriptions, and support from specialist haemoglobinopathy teams can help you manage the condition effectively (Learn more).
-
Community Support: Organisations like the Sickle Cell Society offer patient groups, counselling, and advocacy services to support individuals and families living with SCD.
Treatment and Management
While there’s no widespread cure for SCD, there are effective treatments to manage symptoms and prevent complications:
-
Pain relief: Over-the-counter medications like paracetamol or stronger prescription medicines for severe pain.
-
Hydroxyurea: A medication that can reduce the number of sickle cell crises and other complications.
-
Blood transfusions: Help treat anaemia and prevent complications like stroke.
-
Preventing infections: Regular vaccinations and daily antibiotics (like penicillin) to reduce the risk of serious infections.
If you need treatment for Sickle Cell Disease (SCD) in the UK, start by contacting your GP, who can refer you to a specialist sickle cell centre for comprehensive care, including pain management, hydroxyurea therapy, blood transfusions, and infection prevention (NHS, 2024). Specialist centres provide tailored treatment plans, and you can find more information on the NHS website.
The Sickle Cell Society also offers support, resources, and a helpline for guidance (sicklecellsociety.org). Additionally, the NHS has recently approved an advanced gene-editing therapy, exa-cel, for severe cases, available at specialist centres in London, Manchester, and Birmingham (NHS England, 2025). Speak with your healthcare provider to explore the best treatment options for you.
The Mental Health Impact of Sickle Cell Disease
SCD doesn’t just affect your body it can take a toll on your mental health too. Living with chronic pain, frequent hospital visits, and the unpredictability of sickle cell crises can lead to feelings of stress, anxiety, and depression.
Common mental health challenges include:
-
Chronic stress: Worrying about when the next pain crisis will happen or how SCD might affect your future.
-
Depression: Feelings of sadness, hopelessness, or a loss of interest in activities you once enjoyed.
-
Anxiety: Nervousness or fear about health complications, work, or relationships.
-
Isolation: Feeling alone or misunderstood, especially if friends or family don’t fully understand what living with SCD is like.
It’s important to take your mental health seriously. Talking to a counsellor, joining support groups, or discussing your feelings with friends, family, or healthcare professionals can make a big difference. Organisations like the Sickle Cell Society also offer resources and support to help you navigate both the physical and emotional aspects of living with SCD (learn more with the NHS).
Coping and Support
Managing SCD means looking after both your body and mind. It’s important to:
-
Stay hydrated: Drink plenty of water to help prevent sickle cell crises.
-
Avoid extreme temperatures: Both hot and cold weather can trigger symptoms.
-
Manage stress: Relaxation techniques, hobbies, and support from friends and family can help reduce emotional strain.
-
Stay connected: Joining support groups like ours or others or talking to others who understand SCD can help you feel less alone.
