A common request I get from the TSC Community is for resources, so I thought I would do a Top 5 list of resources that you might find helpful.
- Surveillance and management guidelines for TSC This is by far the resource that I refer to the most. I frequently recommend printing it out and taking this to a new or existing GP so that they have a basic understanding of what is required in regard to ongoing testing and surveillance. It also provides great information for people newly diagnosed and is useful as they age with age specific recommendations.
- Epilepsy Action When members of the community are looking for epilepsy specific services or advice, I refer here. For example, they have a great page on seizure monitors and wearable technology.
- Carer Gateway It is not easy to be a carer! This website from the Australian Government offers help and advice as well as support including phone counselling and peer support.
- Trapeze provides great transition resources to help young people who are moving from child to adult health services. Although based out of the Sydney Children’s Hospitals Network, Trapeze has some wonderful factsheets and checklists that are useful no matter where you live.
- Disability Gateway is a great resource to link to disability supports and services. You may remember seeing commercials for this organisation if you watched the Paralympics recently. They have information on financial supports, aids and equipment, housing and transport. It is a really helpful site that holds a wealth of information on government and community supports right across Australia.
So, there you have it – my Top 5! What are yours? If there are any great resources that you think I should know about to share with our TSC Community, please drop me a line at [email protected] or call me on 1300 733 435.
And, of course, the TSA website is a fantastic resource, with content being updated as new information becomes available. Of particular relevance to many of our families are the Information Pages, Parachute Packs and our Tubee Children’s Book.
phone: 1300 733 435
email: [email protected]
TSA’s Nurse Service is part of the Patient Pathway’s Telehealth Nurse Program.