Last updated: 14 October 2020. This page will continue to be updated with the latest information if government advice changes.

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There is widespread coverage across the UK media about coronavirus (also known as Covid-19). If you or a member of your family have TSC, you may have questions or feel anxious about how the virus may affect someone who is living with TSC.

The TSA is here for you, now more than ever. Below is an overview of information regarding TSC and covid-19, developed in-part with doctors from TSC clinics across the UK to ask for their advice.

Remember, the TSA support line is here to provide support on all TSC-related topics and you should never feel alone. You can contact our friendly team by phone (0808 801 070), email (support@tuberous-sclerosis.org) or post (TSA, Unit 56, 1 Emma Street, London E2 9FP, or send to ‘Freepost TSA’).

There is no specific evidence that TSC makes you more likely than anyone else to catch coronavirus, and it does not necessarily mean that you are at greater risk of developing severe symptoms.

Some people living with TSC may be considered extremely vulnerable to the worst affects of covid-19. If your doctor has told you that you fall into this category (i.e. you were previously asked to shield), then you should be aware of UK government guidance for this group.

Information for people living with TSC

The NHS is advising that if you have any long-term condition it is important to avoid catching and spreading coronavirus. You should pay attention to NHS advice on social distancing.

If you are in one of the following groups then you should be extra careful because your symptoms might be more severe if you do get sick:

  • If you are taking everolimus or sirolimus tablets or liquid
  • If you have lymphangioleiomyomatosis (LAM) or reduced lung function
  • If you have significantly reduced kidney function

Information for families and carers

If you are supporting someone living with TSC who is severely affected by the condition, you should consider whether they are:

  • Able to understand and follow advice about regular hand-washing and good hygiene to stay safe
  • Likely to be able to tolerate intensive treatment if they become ill

If your loved one is unable to stay safe and unlikely to tolerate treatment if they become ill, then you should follow NHS advice on social distancing and be aware of NHS advice on self-isolation.

Mencap have produced an easy-read guide to help you talk to your loved one about coronavirus.

The UK Government strongly recommends that face coverings are worn in all public places where keeping your distance from others isn’t possible. However, someone living with TSC may find that wearing a mask is distressing or impossible due to how TSC affects them.

In the context of the coronavirus outbreak, a face covering is something which safely covers the nose and mouth. You can buy reusable or single-use face coverings or use a scarf, bandana, religious garment or hand-made cloth covering that securely fits around the side of the face. Face coverings are not classified as PPE (personal protective equipment), which should be reserved for a limited number of settings.

Depending on where you live in the UK, it might be mandatory to wear face masks in different public settings, such as on public transport, in hospitals or in shops. Guidance on where it is or isn’t mandatory to wear a face covering is changing regularly, with the latest guidance available here.

In situations where face masks are mandatory, exemptions and reasonable circumstances could mean that someone does not need to wear a face covering. This includes:

  • Exemption based on age. In England children under 11, in Scotland children under 5, and in Northern Ireland – children under 13 are exempt
  • Not being able to put on, wear or remove a face covering because of a physical or mental illness or disability
  • If putting on, wearing or removing a face covering will cause the person severe distress
    • Scotland’s guidance goes further than other nations, stating: Individual discretion should be applied in use of face coverings for children. For example, children with breathing difficulties or disabled children who would struggle to wear a face covering
  • If a person relies on lip reading to communicate
  • If a person needs to eat, drink or take medication for health reasons

For the TSC community, someone affected by TSC may therefore be exempt from wearing a face covering if it could cause severe mental and/or physical distress, such as due to living with autism, LAM or facial angiofibromas. The TSA is working hard to further clarify the situation, whilst also looking at ways to help those unable to wear a face covering to show that they are exempt.

Not everyone in the TSC community have been listed as ‘extremely vulnerable’ to covid-19. Clinicians from NHS TSC Clinics that we have spoken to recommend that you should follow advice for people who are ‘extremely vulnerable’ if you are in one of the following groups:

  • If you are taking everolimus or sirolimus tablets or liquid
  • If you have lymphangioleiomyomatosis (LAM) or reduced lung function
  • If you have significantly reduced kidney function
  • If you are severely affected by the condition, and you are not able to understand and follow advice about regular hand-washing and good hygiene to stay safe and unlikely to be able to tolerate intensive treatment if you become ill

Early in the pandemic, those considered ‘extremely vulnerable’ to the worst effects of covid-19 were asked to shield. Since then, national shielding has been indefinitely paused across the UK, but recommendations on what you should do if you are clinically vulnerable to covid-19 may differ depending on where in the UK you live. This is part of the three-tiered lockdown system now in action across the UK, which focuses on different rules for different areas, dependent on how many cases of covid-19 there are in the area.

More information on how to stay safe if you are ‘extremely vulnerable’ to covid-19 can be found on the UK Government website.

This assessment tool by NHS Digital can be useful in understanding whether a person should shield or not.

Advice from the UK Government on how to stay safe and what to do it you feel ill will be updated regularly based on the best available evidence. You can use the following link to keep up-to-date with the latest guidance from the NHS, including answers to the most common questions.

At the start of the pandemic, doctors in NHS TSC clinics advised most but not all of their patients to temporarily stop taking everolimus or sirolimus tablets or liquid. Since then, the risk of anyone in the UK becoming ill from the virus that causes coronavirus has reduced but not gone away completely, and the virus will probably be around for at least another year.

Now that we know more about covid-19 and TSC, many doctors in the NHS TSC clinics feel more confident advising almost all of their patients to restart taking everolimus or sirolimus at their previous dose. Alongside this, those taking this medication should continue to practice social distancing, wash their hands regularly, and wear face masks in line with government advice (for example, when using public transport or visiting hospitals).

If you have previously been taking everolimus or sirolimus, you should now contact your doctor for advice on whether you should start retaking the medication to avoid the risk of the growths caused by your TSC coming back and causing problems in the future.

Your doctor’s advice may change from week-to-week depending on the Government’s assessment of the risk to the UK population from the virus (this is assessed as low, moderate or severe), how many people in the general population have already caught the virus, and how the virus is affecting people (which may change over time). It is possible that shielding – on either a national or local level – will be necessary again in the event of a future outbreak of coronavirus.

Your doctor’s advice may also change if you are alerted by NHS track and trace that you have been exposed to coronavirus or become ill, and their advice may be different based on why you are taking the drug:

  • If you are taking the drug for kidney angiomyolipomas (AMLs) or subependymal nodules (SEGAs), then there may be less risk associated with you taking a break from treatment if you are exposed to coronavirus or become ill. Your doctor may recommend that you stop taking the drug for a short period if you are exposed to the virus or until you get better if you become ill
  • If you are taking the drug for refractory epilepsy or LAM, then there may be more risk associated with you taking a break from treatment if you are exposed to coronavirus or become ill. Your doctor will wish to discuss what to do with you so you can make an informed decision about whether to keep taking the drug or stop taking it, taking into account your medical history and weighing up the respective risks from epilepsy or LAM and coronavirus

Using sirolimus cream (sometimes called topical sirolimus) should not increase your risk of serious symptoms if you catch coronavirus. You should be able to keep using the cream as normal.

If you have LAM or reduced lung capacity then you may be at greater risk of developing severe symptoms if you become ill. You should pay attention to NHS advice on social distancing.

You may find this information published by the LAM Foundation (a specialist charity based in the US) helpful.

You may find this information published by the British Lung Foundation for people with lung conditions helpful.

If you are taking sirolimus or everolimus tablets or liquid for LAM, then there may be more risk associated with you taking a break from treatment if you are exposed to coronavirus or become ill. Your doctor will wish to discuss what to do with you so you can make an informed decision about whether to keep taking the drug or stop taking it, taking into account your medical history and weighing up the respective risks from LAM and coronavirus. The increased risk from stopping the medicine is because it is possible that your lung function may decline.

Currently there is no information to say that people with epilepsy are more severely affected than people without health conditions.

You may find this information published by Epilepsy Action for people living with epilepsy helpful.

If you are taking sirolimus or everolimus tablets or liquid for refractory epilepsy, then there may be more risk associated with you taking a break from treatment if you are exposed to coronavirus or become ill. Your doctor will wish to discuss what to do with you so you can make an informed decision about whether to keep taking the drug or stop taking it, taking into account your medical history and weighing up the respective risks from refractory epilepsy and coronavirus. The increased risk from stopping the medicine is because it is possible that your seizures may get worse.

There are different guidelines in place across England, Scotland, Wales and Northern Ireland for children and their education as a result of the covid-19 outbreak. However, the majority of schools have re-opened and are operating with social distancing measures in place.

More information on education during covid-19, including for specific UK nations, can be found here.

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