The Australasian Tuberous Sclerosis Society

I wanted to update ATSS on the progress my daughter, Rebekah has made.

From her early days of seizures, medication, difficult behaviour, special schools and total focus of our family lives, Rebekah is now almost totally independent. Rebekah was married over two years ago, has remained in her job at Coles supermarket for seven years. For over twelve months, Rebekah has been totally off all seizure medication and seizure free.

Rebekah has several very large angiomyolopomas which are situated in a position to awkward to operate. They currently cause no concern and she enjoys very good health. Mild autistic tendencies create some difficulties in day to day life but Rebekah is doing remarkably well when we consider the prognosis given in those early years.

My message to all facing a new diagnosis of Tuberous Sclerosis Complex is - hang in there, there will be more breathing space in your lives in future!