Tuberous sclerosis - Complications of tuberous sclerosis

Complications of tuberous sclerosis may develop if the condition gets worse. This is why regular screening and treatment is so important.

Possible complications include:

• status epilepticus – a seizure that lasts for more than 30 minutes, or a series of repeated seizures where you do not regain consciousness in between
• bronchopneumonia – having bronchitis (infection of the main airways of the lungs) at the same time as pneumonia (infection of the lung tissue)  
• kidney failure – your kidney stops working completely

Status epilepticus and bronchopneumonia are the most common reasons for people with tuberous sclerosis dying early. They are more likely to occur in people with severe learning disabilities.  

SUDEP

If you have epilepsy that is difficult to treat, you may be at risk of sudden unexpected death in epilepsy (SUDEP). This is when somebody with epilepsy dies and no apparent cause can be found. SUDEP may affect about 1 in every 250 people with difficult epilepsy.

Find out more about SUDEP on the Epilepsy Action website.

Kidney problems

Kidney failure is usually caused by polycystic kidney disease, although sometimes it is related to multiple surgeries for bleeding angiomyolipomas (AMLs). AMLs are tumours in the kidneys that are made up of blood vessels, muscle and fat.

An individual tumour can grow larger than 3cm and keep growing. The tumour can then develop a huge but weak blood vessel, which may burst. This causes bleeding, which can be life threatening because of the size of the blood vessel. Over a lifetime, up to two to three out of 10 people with tuberous sclerosis will have an episode of bleeding.