Living with TSC

If you or someone close to you has been diagnosed with tuberous sclerosis complex, TS Canada ST can  help with up-to-date medical information and a community of support to help you learn to live with TSC.

Although the prognosis for many people living with TSC is generally good, careful monitoring of all organ systems and development is critical.  Ultrasound in utero can detect heart tumours, assisting with early diagnosis and prompt monitoring in order to prevent complications related to TSC.

Treatment for people with TSC includes the management of seizures, special education for those who need it, and surgery, including plastic surgery.

The first medication for the treatment of SEGAs has been approved in Canada: Afinitor* (everolimus) tablets are indicated for the treatment of patients three years of age and older with SEGAs associated with TSC for whom surgery is not a suitable option.

Tuberous sclerosis complex research is progressing rapidly, giving hope to affected families for more effective treatments.  Clinical trials of tumour-suppressing drugs continue to produce very encouraging results, with potential implications for treatment of multiple organ systems, and hopefully even of some of the seizures and developmental delays caused by the disorder.

Non-affected individuals are encouraged to have regular medical check-ups especially during ages 0-20 when the child’s brain and body are developing.

The prognosis for the majority of people with tuberous sclerosis complex is excellent. A high proportion of individuals who are afflicted lead normal lives and for most people, even those with severe handicaps, life expectancy is normal. However, premature death can result from serious disabilities related to the disorder.

Recent research has focused on behavior management, seizure management and genetics.

Future research will greatly aid early and accurate diagnosis and treatment.

Over twenty years ago, TSCST began at the kitchen tables of people just like you.  Join us in this journey to find better outcomes for individuals living with TSC, and for those who love them.

To find out how you can become part of the TSC Canada community, participate in TSCST events, find others in your area who are living with TSC, get more information on TSC and how to contact Canada’s TSC clinics, explore this website and contact us at our email and toll-free number.

 

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This information © of the Tuberous Sclerosis Alliance and used with permission 2014. All rights reserved.