Resources & FAQs

A stroke is a brain attack. It happens when the blood supply to the brain is cut off due to a clot blocking the flow of blood to the brain (also known as an ischaemic stroke) or a bleed in or around the brain from a burst blood vessel (also known as a haemorrhagic stroke).

About 17% of children with SCD also have ‘silent infarcts’ – strokes with no obvious symptoms at the time but which can lead to cognitive impairment (such as diminished memory, attention, emotion, concentration or reason) in the long term. In the case of ‘silent’ strokes, because there are no obvious signs it is important to look out for possible long term changes in children with SCD.

These could include changes in behaviour, concentration, memory, fatigue levels or handwriting.

Many parents and teachers do not know the potential risk of ‘silent’ stroke and can overlook or misinterpret changes in behaviour or concentration, putting it down to children playing up.

In the case of children with SCD, it is important to investigate these changes just in case they are a result of ‘silent’ stroke.

It is recommended that children with SCD between the ages of 2 and at least 16, should be screened for stroke on an annual basis using an ultrasound test called Transcranial Doppler scan (TCD).

TCD is a device that uses painless and harmless ultrasound (sound waves) to find areas of abnormal blood flow in the brain’s blood vessels which could indicate a higher risk of stroke.

A large American study performed in the 1990s, called the Stroke Prevention Trial in Sickle Cell Anaemia, showed that children with abnormal TCD who receive regular monthly blood transfusions have a 90% lower risk of stroke.

Children with abnormal TCD should be offered long term blood transfusions, although, as this is linked to iron overload (excess build-up of iron in the body), medical decisions will need to be made on a case-by-case basis.

The choice is yours. We advise for you to find out everything you need to know about sickle cell, visit families that have children that have sickle cell and ask questions, ask your friends that have it. There is so much that is unspoken, ASK!

Children with SCD are more likely to have strokes than those without the disease. Of all people with SCD, the risk of stroke is highest in the most commonly detected type of sickle cell disease – sickle cell anaemia (HbSS).

The risk of stroke in children with SCD is greatest between the ages of 2 and 16. About 10% of all children with SCD will have a stroke by the time they are 20 years old. Stroke recurrence is also a major concern for children and their families.

Stroke recurs in over 60% of children with SCD.

Our advice is that young people aged 16 – 30 should know their genotype; it is a simple blood test that will help you make good decisions in the future.

You should not, but in extreme circumstances, you could mimic someone who has sickle cell in pain especially when undergoing training like in the army or extreme sport like running a marathon or going to high altitude areas.

It’s a label, labelling someone is wrong. The person is known by their illness and not who they are. They lose their identity as a person and are made to feel like they are no better than someone without the disorder is. Labelling leads to stigma and low self-esteem please stop.