Kidney health is a serious concern for many people living with TSC. Renal cysts and angiomyolipomas (AMLs) often develop. These can obliterate healthy renal tissue and cause bleeding as they grow, leading to chronic kidney disease or devastating bleeding complications. Approximately … Read More
On 8 April 2020, Rare Voices Australia (RVA), in conjunction with its Scientific and Medical Advisory Committee, issued this statement calling for the development of critical care guidelines for Australians living with a rare disease to inform Australian hospitals and … Read More
Angiofibromas (AF) are found in a majority of individuals with TSC over 5 years of age. These small bumps are usually scattered on the face, especially on the nose and cheeks, and sometimes on the forehead, eyelids, and chin. Topical sirolimus … Read More
Seizures in tuberous sclerosis complex (TSC) commonly develop in the first year of life and they are often preceded by changes being evident on electroencephalogram (EEG). The onset of such seizures is particularly significant as it is thought that they … Read More
This excellent paper, which is well worth reading in its entirety, is written by an eminent team of TSC expert health professionals in the UK. It discusses the need to improve TSC management to ensure people with TSC have early … Read More
The April 2020 edition of Reach Out is now available to read online. This issue’s contents include: Getting the most out of a visit to your GP, Parker’s Story, Research News and much more…
Currently we send a paper copy of Reach Out twice a year and we also publish the magazine on our website. Some of our community have told us that they are happy to read information online as posts and feel … Read More
Unfortunately, in recognition of the evolving situation and the risks stemming from the Coronavirus pandemic (COVID-19), we have made the disappointing but necessary decision to cancel the TSC Conference due to take place in Sydney on 2 and 3 May … Read More
While most paediatricians and child neurologists have become good at identifying and treating the physical manifestations of TSC, it remains difficult to identify and treat the neuropsychiatric issues commonly associated with TSC. Why the TAND checklist was developed In 2012, the … Read More
Up to 90% of patients with TSC have epilepsy and in over half of those, seizure control cannot be achieved by regular antiepileptic drugs. This is commonly known as uncontrolled, refractory, intractable, or drug-resistant epilepsy. Everolimus and sirolimus are both mTOR-inhibiting drugs … Read More
