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Coronavirus and TSC: Information for the TSC community

Category: COVID-19, TSA News | 0

We know that like everyone, our TSC community is being flooded with many sources of information 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 you.

Having TSC does not make 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.

However, if you have TSC and are in one or more of the following groups then your symptoms might be more severe if you do contract the virus:

  1. you are taking everolimus or sirolimus tablets or liquid
  2. you have lymphangioleiomyomatosis (LAM) or reduced lung function
  3. you have refractory epilepsy

If you are taking everolimus or sirolimus tablets or liquid, we recommend you might want to speak with your doctor for advice on how to best manage your situation.

Staying up to date with the latest information

As you will already have seen, the information on Coronavirus is fast-changing.  We recommend you get the latest information from your state or territory health service and keep up to date with their advice.  Their recommendations and advice cover people with immunosuppression and people with comorbid conditions. Click on your local state health service to be directed to their latest advice.

ACT Health Service 

NSW Health Service

NT Health Service

QLD Health Service

VIC Health Service

SA Health Service

TAS Health Service

WA Health Service

The phone number of your state or territory public health agency is available at www.health.gov.au/state-territory-contacts

If you need to speak to someone about Coronavirus, you can call the National Coronavirus Health Information Line on 1800 020 080. It operates 24 hours a day, seven days a week. If you require translating or interpreting services, call 131 450.

As always, our TSA Nurse is here to provide support on all TSC-related topics and you should never feel alone. You can contact our nurse by phone on 1300 733 435 or via email at [email protected]

We hope you and your family and friends all remain safe and well during this time.