Sickle cell disease and stroke

A stroke is a serious condition that happens when the blood supply to part of the brain is cut off.

Although a stroke is a rare complication of sickle cell disease (SCD), people with SCD are more likely to have a stroke than those without the condition.

The risk of a stroke in people with SCD is greatest between the ages of 2 and 16 years. A stroke can affect up to 1 in 10 people (10%) with SCD by the time they are 20 years old. Strokes can also happen in adults with SCD.

If you have had a stroke, you are more likely to have another one. The sickle cell team can give you effective treatment to reduce the risk of further strokes. 

Stroke is more common in people with HbSS (a type of SCD), than in other types of SCD. 

Other factors that increase the risk of strokes include:

  • ethnicity
  • certain health conditions, such as high blood pressure, and diabetes
  • lifestyle factors such as smoking, drinking alcohol, and being overweight

Signs of a stroke

It is important for you to know what the signs of a stroke are. 

The main symptoms of a stroke can be remembered with the word FAST. 

  • Face – the face may have dropped on 1 side, the person may not be able to smile, or their mouth or eye may have dropped.
  • Arms – the person with suspected stroke may not be able to lift both arms and keep them there because of weakness or numbness in 1 arm.
  • Speech – their speech may be slurred or garbled, or the person may not be able to talk at all despite appearing to be awake; they may also have problems understanding what you're saying to them.
  • Time – it's time to dial 999 immediately if you see any of these signs or symptoms.

Call 999 immediately if:

  • you suspect any signs of a stroke

Let the call handler know that you, or someone else, has symptoms of a stroke. It is important to call 999 for an ambulance so that you can be taken to hospital for emergency treatment. You will need to have a brain scan as quickly as possible. 

The scan will determine what type of stroke it is, and will help with any possible treatment.

The local acute stroke unit is at King’s College Hospital and the ambulance will take you there, instead of St Thomas’ Hospital. If you do not live locally to these hospitals, the ambulance will take you to the nearest acute stroke unit. 

Causes of a stroke

A stroke happens when the blood supply to the brain is cut off due to a:

  • clot (also known as an ischaemic stroke)
  • bleed in, or around the brain from a burst blood vessel (also known as a haemorrhagic stroke)

When the blood supply is disrupted, parts of the brain become damaged or destroyed.

Other types of stroke 

‘Silent’ strokes are those with no obvious symptoms at the time, but show up on certain brain scans. They can lead to problems with memory, concentration and problem-solving abilities. 

A transient ischaemic attack (TIA) is like a mini-stroke. The symptoms last for less than 24 hours.

The NHS has more information about a transient ischaemic attack (TIA)

A silent stroke or TIA can increase your risk of having another stroke. If you think or know you have had a silent stroke or TIA before, it is important to let the sickle cell team know.

Effects of a stroke

A stroke may cause:

  • weakness on one side of the body
  • difficulties walking
  • difficulties speaking, reading, or writing
  • tiredness
  • incontinence (not being able to control your bladder or bowels)
  • seizures (fits). A very small proportion of people may have seizures around the time of the stroke. An even smaller proportion will go on to have more seizures, meaning they have developed epilepsy

Strokes can also affect the mental processes involved in activities such as:

  • learning
  • understanding
  • remembering
  • problem solving

Personality and emotional changes 

Sometimes people notice personality changes after a stroke.

It is also common for people to notice emotional changes such as depression, anxiety, mood swings and loss of interest.  

Preventing a stroke

Everyone can reduce their risk of having a stroke by: 

  • Looking after your diet, and limiting salt and fat. An unhealthy diet can increase your blood pressure and cholesterol levels, which can increase chances of a stroke. Read more about eating well and healthy weight.  
  • Exercising. Exercising regularly can help lower your cholesterol and keep your blood pressure healthy. You can read more about exercise.
  • Giving up smoking. Smoking narrows your arteries and makes it easier for blood to clot. If you would like to stop smoking, please speak to your nurse or call our stop smoking service, phone 020 7188 0995, or the NHS Smoking Helpline, phone 0300 123 1044
  • Limiting alcohol intake. The NHS website has alcohol advice

Make sure you attend all your clinic appointments, as this is where we can monitor your health and check your blood pressure. A high blood pressure can increase the risk of stroke.

If you have been prescribed medicines for your blood pressure, it is important that you take them. 

Testing for stroke 

We can identify children at high risk of a stroke by doing a scan of the blood vessels to the brain, called a transcranial Doppler ultrasound. Most children will have this test done once a year. This test is not useful for most adults with SCD. 

Resource number: 5487/VER1
Last reviewed: April 2024 
Next review due: April 2027

Contact us

If you have any questions, please contact the consultant haematologist’s secretary. 

Phone: 020 7188 2741, or 075 4815 2680

Or, you can contact the clinical nurse specialist.

Phone: 020 7188 1424, or email: [email protected] 

Do you have any comments or concerns about your care?

Contact our Patient Advice and Liaison Service (PALS)

Is this health information page useful?