INFORMATION ON TS LIVING WITH TUBEROUS SCLEROSIS

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 recently 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.