COVID-19 Vaccinations and TSC

COVID-19 Vaccinations and TSC – Information for Australia

Adults (aged 16 and above) with Tuberous Sclerosis Complex (TSC) will be able to receive COVID-19 vaccinations in the upcoming months. Ultimately, getting the COVID-19 vaccine will be a personal decision.

You or your child with TSC should speak to your GP or TSC clinician prior to being vaccinated.  If you or your child is being treated with medications such as mTOR inhibitors like Everolimus you should speak to your GP or TSC clinician before any decisions are made about whether to stop or continue treatment alongside vaccination.

Information on the ingredients of vaccines approved for use in Australia is available in the Consumer Medicines Information leaflet on the TGA website at: using the search term ‘Consumer Medicines Information’.

It is highly likely that receiving the COVID-19 vaccine will protect individuals from severe COVID-19 infection, and it seems prudent for use in individuals with TSC.

Important note: To date, vaccinations are not being made available to children as large trials of the vaccinations in children under age 16 have not yet been completed.  As information changes rapidly, keep up to date with the current health advice at Australian Government Department of Health

Information from the UK and the USA

COVID-19 vaccinations have been widely available in other countries and more than 200 million doses have already been given. Vaccinations have been available since the end of 2020 in the UK and the USA.  TSA has collated the following information from the UK and USA regarding the safety and efficacy of COVID-19 vaccination in individuals facing the multi-system challenges of TSC including LAM, kidney disease, epilepsy, and autism. The current data suggests the risk-benefit ratio of this vaccine is highly favourable.

US Alliance:

US LAM Foundation:

UK Association: