The Australasian Tuberous Sclerosis Society

Jannifer's son Nathan, born September, 1989, has Tuberous Sclerosis. My initial contact with ATSS was when Nathan was diagnosed at 8 months of age. I was lucky that his neurologist gave us the details of the society.

Nathan was originally diagnosed as epileptic at age 6 months, he was having infantile spasms. He was treated with ACTH and put on Tegretol. He is severely intellectually affected, no speech or formal communication skills and epilepsy which has not been fully controlled since 3 years of age.

Nathan has the typical facial rash, (angiofibroma) which was treated with the argon laser at a young age, white patches and 2 pigmented spots on his body. He has calcifications on his brain and had a benign brain tumor, (giant cell astrocytoma) removed when he was 5 years old. He also has some autistic tendencies as well as kidney and liver involvement (angiomyolipomas) and has a bone density on his pelvis.

Nathan is an affectionate young teenager who enjoys music, swimming and outings. He attends a special school in the Hunter Valley where he is working on an individual programme towards independence.

Being a member of the committee is very rewarding for me as I feel that I can offer something back for all the support ATSS has given me over the years with helping me understand this condition. It's also a great opportunity to talk with other people who have been affected by TSC, either personally or have a family member. I have been involved in many groups and have attended many seminars on various topics over the years and have met some wonderful people that have enriched my life.