What is the fate of patients with TSC? How treatment and care?
The severity of TSC and the future of TSC patients are very dependent on the location of the organ where the tumor grows and the available health facilities and the accessibility of TSC patients.

Tumors located in vital organs like the heart, lungs, kidneys and brain could potentially worsen the quality of life and life threatening. However, patients with mild symptoms can have a quality of life similar to normal people.

TSC treatment depends on clinical manifestations occur, depending on the organ where the tumor grows and ideally requires cooperation across specialties. This treatment requires a lifelong time and effort is focused on extending life and improving quality of life.

It also required cooperation among fellow parents or families who have children with TSC to form a group of social support (social support group). Social support group is very useful for a place to share experiences and information among patients with TSC and the consulting physician specialists with experience in TSC patients.

There is no treatment proven to effectively stop the growth of tumors that occur. However, until recently in many countries in Europe and America are being carried out clinical trials to determine efficacy and safety of a drug called ’serolimus’. This drug has the effect of inhibiting tumor growth and stripping. Still it took several years to make it ready for use.

Currently in the Human Genome Center, School of Medical Sciences, Universiti Sains Malaysia has initiated research to investigate mutations that occur in patients with TSC. Initial research to detect mutations that occur are very important to understand the occurrence of TSC in Southeast Asia, before a more therapeutic research starts. Not rule out the possibility in the not long there are also opportunities to conduct clinical trials similar to those conducted in European countries and America.