Conditions & syndromes · England
Understanding tuberous sclerosis
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Tuberous sclerosis is often called TSC.
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What it means
TSC is a condition you are born with.
You cannot catch it from someone.
It is different from tuberculosis.
TSC can cause growths in different parts of the body.
These growths are usually not cancer.
They can still cause health problems.
People with TSC can have very different needs.
Not everyone has a learning disability.
Your interests and choices matter.
Tests and checks
Ask a specialist to explain your test results.
You can ask what they mean for your family.
You need regular health checks.
Ask which checks you need and when.
Ask who will arrange them.
Treatment and support
If you have seizures, ask for a care plan.
The plan should say what to do during a seizure.
Supporters need training for any emergency medicine.
Ask for help with learning, feelings, sleep or communication.
Tell the health team about new problems.
Different treatments can help with different problems.
Ask your specialist to explain your choices.
Do not change medicines yourself.
Keeping support going
Health checks continue in adult life.
Ask who will help organise your care.
The Tuberous Sclerosis Association offers information and support.
What you can do next
Ask for a plan that fits your own needs.
Make sure you know who to contact for help.
Find information and support from the TSA Web pageThis link opens another website.
It may use harder words.
More useful links
- TSA: what is tuberous sclerosis? Web page
An overview, including an Easy Read explanation on the page.
- TSA: referral to an NHS TSC clinic Web page
How to discuss specialist referral and ongoing appointments.
- TSA: treatment and monitoring Web page
Information to discuss with the team planning your individual care.
- NHS: epilepsy Web page
Seizure care plans, treatment and when to seek urgent help.
These links open other websites.
They may use harder words.
Tuberous sclerosis (TSC)
Understand tuberous sclerosis, individual health checks, seizures, learning needs and support throughout life.
Children and adults · England · General information
What TSC means
Tuberous sclerosis complex is usually shortened to TSC. It is a genetic condition present from birth, although it may be recognised later. It can cause growths in organs such as the brain, kidneys, heart, lungs, skin and eyes. These are usually non-cancerous, but their location or growth can still cause problems. TSC is different from tuberculosis, which is an infection. You cannot catch TSC from someone.
Diagnosis and family questions
A specialist may use examinations, scans and genetic tests to investigate TSC. Genes carry instructions for how the body grows and works. Changes in genes called TSC1 or TSC2 are involved. These may be inherited or happen as a new change. Not finding a gene change does not always rule out TSC; clinical findings also matter. A genetics team can explain the result, whether relatives need assessment and choices concerning future pregnancies.
Agree your health checks
The specialist should arrange monitoring based on the person's age, findings and needs. This can include brain and kidney scans, blood pressure and kidney tests, and checks involving the heart, lungs, skin, eyes or teeth. Some problems can develop before symptoms are noticed. Ask which checks apply to you, when they are due and who will arrange them. Not everyone needs the same tests or timetable.
Seizures and an epilepsy plan
Epilepsy is common in TSC and needs specialist assessment and treatment. Ask for a written care plan describing the person's seizures, regular treatment, first aid and when to seek emergency help. If emergency medicine is prescribed, supporters need the right instructions and training. Do not change epilepsy medicines yourself. Report new or changing seizures promptly; suspected infantile spasms in a baby need urgent medical assessment.
Learning, emotions and TAND
Not everyone with TSC has a learning disability. Some people need support with attention, communication, sleep, emotions or learning. TAND means TSC-associated neuropsychiatric disorders: a term covering these related difficulties. Ask the team to check for them regularly and act on concerns. A sudden change should also prompt consideration of physical illness, pain, seizures or medicine effects. Do not assume it is simply behaviour or an inevitable part of TSC.
Treatment that fits the person
There is currently no cure for TSC, but treatments can help manage particular problems. Depending on the findings, specialists may discuss medicines, surgery or other treatments for growths and symptoms. The right option differs between people. Ask about likely benefits, possible harms, monitoring and alternatives. Ask for information in a way you understand, and include the person's own goals and preferences in decisions.
Living well and moving to adult care
Support may include help with communication, education, work, relationships and everyday activities. Ask for assessment of the actual difficulty and suitable adjustments. Plan the move from children's to adult services early, with named contacts and written arrangements for continuing checks. Adults still need appropriate monitoring even when they feel well. Discuss new symptoms with the care team rather than waiting for a routine review.
Finding specialist help and support
The Tuberous Sclerosis Association provides information and support for people with TSC and their families. It explains how to ask a GP or hospital specialist about referral to an NHS TSC clinic. Ask which clinician coordinates your care and whom to contact between appointments. Keep an accessible record of current medicines, appointments and your questions. Support should reflect your own circumstances, not another person's experience of TSC.
Words you could use
“Please explain which health checks I need, who coordinates my care and what support will help with my own goals.”
More useful links
- TSA: what is tuberous sclerosis? Web page
An overview, including an Easy Read explanation on the page.
- TSA: referral to an NHS TSC clinic Web page
How to discuss specialist referral and ongoing appointments.
- TSA: treatment and monitoring Web page
Information to discuss with the team planning your individual care.
- NHS: epilepsy Web page
Seizure care plans, treatment and when to seek urgent help.
These links open other websites.
They may use harder words.
Where the information comes from
Links checked 9 November 2026.
These links open other websites.
They may use harder words.
- TSA: what is TSC? Web page
Genetic condition, variable effects and growths; TSC cannot be caught from another person.
- NHS Genomics Education: tuberous sclerosis complex Web page
TSC1 and TSC2, inherited and new changes, clinical or genetic diagnosis and variable needs.
- TSA: treatment and management Web page
Individual monitoring, treatment options and long-term care.
- TSA: epilepsy Web page
TSC-related seizures, assessment, treatment and urgent assessment of suspected infantile spasms.
- NHS: epilepsy Web page
Individual seizure plans, emergency medicines and training, and medicine review.
- TSA: intellectual ability Web page
Individual differences in learning needs and assessment of changes.
- TSA: international TAND recommendations Web page
Regular review, action on concerns and consideration of physical health and medicine effects.
- TSA: transition to adult life Web page
Planning continuing care and support as a young person becomes an adult.
- TSA: NHS clinic referral Web page
Referral routes, follow-up appointments and contacting the clinical team.
- NHS: tuberculosis Web page
Tuberculosis is an infection and is different from tuberous sclerosis.