Today is Global TSC Awareness Day 2019, a landmark annual day for the entire TSC community. Louise Fish, Chief Executive Officer of the TSA, discusses how sharing individual stories about TSC can help push forward the global agenda on improving the lives of people affected by TSC.

Every May, Global TSC Awareness Day gives us the opportunity to raise the public profile of TSC worldwide. For the one million people who are affected by TSC globally and their loved ones, today is often a time of reflection, with many looking back at what living with this diverse condition means to them.

Although everyone affected by TSC experiences the condition differently, the entire TSC community shares a common understanding of the impact that TSC can have on daily life. Yet, outside of the TSC community, knowledge of the condition and what it means to be affected by TSC is less well known.

As is common across all rare diseases, the real-life stories of people who have first-hand experience of TSC can sometimes be forgotten. That is why, for this year’s Global TSC Awareness Day, the TSA would like to thank everyone – from people living with TSC and their loved ones to the medical professionals and researchers who work with them – who has shared their personal accounts of how TSC has affected them. 

Learning about the daily lives of those affected by TSC helps the wider world to see the people behind the condition. It reminds those not part of our community that people living with TSC are not statistics or figures on a screen, but real people and families living full lives whilst facing difficult and unique challenges every day. Only by speaking about our experiences can we highlight the impact that being affected by TSC can have, allowing us to illustrate the importance of identifying ways to improve the lives of the TSC community now and in the future.

By sharing our experiences of TSC, it also means that more people can be brought into the TSC conversation. This can include individuals and families facing a diagnosis of TSC for the first time, researchers seeking ways to make a significant difference to our understanding of TSC, and members of the broader public looking to support an important cause.

What does TSC mean to me? As Chief Executive of the TSA, it is an honour and a privilege to serve the incredible TSC community day-by-day. Witnessing the bravery, passion and enthusiasm of the TSC community drives myself and everyone at the TSA to do everything that we can to improve the lives of those affected by the condition. We have made some fantastic progress over recent years across awareness, support and research into TSC, but we need to continue to push the TSC agenda forward on a global stage if we are to keep up this fantastic momentum.

Today, join me and the rest of the TSC community on Global TSC Awareness Day by taking a step back and thinking about what TSC means to you. By sharing your experiences – including the challenges, highpoints and moments of hope – you can help us to paint a picture of the people who make up our wonderful community.

– Louise