Every week, another baby is born in Australia with tuberous sclerosis complex (TSC) joining the 2000 Australians already living with the complex genetic disease. TSC tumours can grow in any organ of the body, commonly affecting the brain, skin, heart, lungs and kidneys.
Families who find out their child is diagnosed with TSC are often led down a path of confusion and fear as the information they receive is often incorrect or out-of-date as they discover inaccurate information online about life expectancies and read worst-case scenarios.
Tuberous Sclerosis Australia has recognised a critical need to develop resources to address the lack of up-to-date and accurate information currently available at the time a child is diagnosed with this rare and incurable disease.
The Parachute Pack gives parents and carers the information, connections and hope they need to navigate their child's diagnosis of TSC.
Research has proven that the most harmful effects of TSC (epilepsy, intellectual disabilities and autism) can be reduced if treatment is started early - even before signs and symptoms like seizures appear - so educating parents early while supporting them emotionally is critical to the program.
The Parachute Pack will be distributed to paediatric health services across Australia and includes a check-list for parents to help focus on the immediate priorities of where to go for help; how to access TSC informed health professionals; and what tests and procedures they should seek early on to ensure the best outcomes for their child.
By providing accurate information and resources to support families and carers of children with TSC, the program aims to improve family functioning and parenting confidence and provide a smoother pathway through the health system after diagnosis.
Tuberous Sclerosis Australia also aims to improve health outcomes for the child with TSC through early intervention - eventually leading to lower rates of severe epilepsy, intellectual disability and autism.