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Home » Rare Diseases » A supportive community for people living with tuberous sclerosis complex (TSC)

Laura Enright

TSC Ireland Committee

Raising awareness of tuberous sclerosis complex (TSC) and the importance of implementing TSC international recommendations can help those affected.

Tuberous sclerosis complex (TSC) is a lifelong disease causing non-cancerous tumours to grow in organs including the brain, kidneys, heart, lungs and skin. There is no cure, but treatments exist. TSC Ireland supports patients and families and promotes the implementation of international TSC consensus recommendations and coordinated care.

Understanding the impact of TSC

Approximately 1 in 6,000 are born with TSC globally, and around 700 people in Ireland are affected. Laura Enright, TSC Ireland Committee Member whose five-year-old daughter has the condition, says: “Some people may be mildly impacted while the burden of disease for others can be significant.” Around 80% of people can have epilepsy and other neurological problems including behavioural issues, intellectual disability and ADHD while 50% may have autism. Lung and kidney disease is also frequently found.

Approximately 1 in 6,000 are born with TSC globally,
and around 700 people in Ireland are affected.

Community for people affected by TSC

TSC Ireland, founded by parents in 2015, raises awareness of TSC and provides support and information to those affected. It is a vibrant community with family days, conferences, webinars, websites and social media platforms where people offer each other constant support and share experiences.

International TSC consensus recommendations

“We want to inform people about the international TSC consensus recommendations and the importance of surveillance and monitoring,” adds Enright. These were compiled by global TSC experts to optimise care for TSC patients universally. Coordinated care in a centre of excellence is recommended, however, patients in The Republic of Ireland have no such centre. “We are collaborating with clinicians to achieve this goal,” says Enright.

“TSC is a very unpredictable disease. However, with information and support, people can lead the best life they could with TSC rather than focus on it being an overwhelming disease, over which they have no control.” Within TSC Ireland, you will find a passionate, committed community empowering its members to live their best lives.

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