Tuberous Sclerosis Australia launches their Parachute Pack
We’re excited to launch Tuberous Sclerosis Australia’s Parachute Packs for #TSCGlobalAwarenessDay, so that families of children with Tuberous Sclerosis Complex (TSC), will have a central resource to access accurate, up-to-date support and information packs, to help manage the disease early and improve quality of life.
Despite more than 2,500 people living with TSC in Australia, and about one million people worldwide, parents are often blindsided by a diagnosis and left searching online for information that is often outdated and inaccurate.
TSC is a rare and debilitating condition, that can have harmful effects, such as difficult-to-control epilepsy that can cause intellectual disabilities and mental health challenges, if not treated early, and not all health professionals know how to support a family after a diagnosis.
Research conducted by TSA also found that parents did not know what to do once their child was diagnosed with TSC, felt they could not access enough or the right information, and while 90% wanted to be involved in clinical trials, only around half had ever discussed this option with their doctor.
It’s why this Parachute Pack is so important. Ensuring parents have access to the right information early enough is key so they can keep on top of their child’s health from the get-go and prevent long-term health impacts.
The Parachute Pack also provides guidance to help parents understand the kind of conversations to have with their doctor which is vital to ensuring their child gets the best treatment from the beginning.
If you’re a family living with TSC and would like to find out more, you can find the Parachute Pack here.