The Australasian Tuberous Sclerosis Society

Leanne is the mother of two boys, Joel & Luke.  She has been involved with the ATSS Committee since 2002 and currently holds the position of Vice President.  Leanne maintains the ATSS member database, answers the 1330 733 435 phone number and helps with various administration/secretarial duties.

Her son, Luke, was diagnosed with TSC in 2000 when he was 5 months of age and she has dealt with a range of TSC associated medical and behavourial problems.  Luke currently attends a Special Needs School with a view to transition to a mainstream setting in the near future. 

Leanne currently works part-time in the adult disability sector, along with casual work in an autistic school. Leanne continues to study in different fields within these areas. 

Leanne balances her family, ATSS and work life in a positive and energetic way and wouldn’t be able to do so without the support of her extended family and friends.

Belinda is married to Charles, and is a mother of three, Sarah (14), Adam (12) and Edward (6).

Sarah was diagnosed with TSC when she was 2 days old and seizures began at 6 weeks. This is when we made contact with ATSS to understand the condition.

I decided to become a member and have volunteered over the years to do the treasury work, assist in fund raising and to support the Committee.

Sarah’s epilepsy ranges from petite mals, complex partial, and now experiencing some generalized seizures. She has maintained fairly good control on two anti-convulsant drugs for nearly 14 years.

For 12 years Sarah saw Ears/Nose/Throat specialists for ear grommets, she has a mild hearing loss in one ear. Her facial rash (angiofibroma) has been treated, with follow-ups required.

Physiotherapy began as a baby to assist her low tone in her upper body. Physio has begun again for her scoliosis and kyphosis.

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.

I have TSC, but I am mildly affected. I was diagnosed when I was 26.

After I was diagnosed with Tuberous Sclerosis I was informed by a doctor that there may be a support group in Australia. After a few phone calls I was given the phone number of Lynn Wilson and rang her. This was in 1995.

I am now a committee member, the editor of Reach Out and am involved in conferences and picnics, sharing information with others.

Tuberous Sclerosis has never caused any serious complications for me. I have some skin markings, but never worried much about them. After I was diagnosed I had some tests, which indicated some calcifications in my brain, but they do not affect the way it functions.

My sister Lizzie has Tuberous Sclerosis. I also have three brothers, none of whom has TSC. I work as a consultant in the Banking industry.

Lizzie was diagnosed when I was about 3 years old, so Tuberous Sclerosis has always been a part of my life. My mother Sue was on the committee and then was President and I have been on the commitee since 2003.

I maintain this website and receive all the emails directed to ATSS. I also get involved in other projects, events and fundraising.

Elizabeth is severly affected by TSC and involves her brain, kidneys, lungs and skin. I am particularly interested in the impacts of disability on siblings and the wider family. I would be happy to hear from any siblings of people with TSC.

Full-time mother of two, Amelia (7 ½) and Lachlan (3 ½) and I work part-time as a job share secretary for Lend Lease.

Our daughter Amelia has TS, diagnosed at 4 months, she has a moderate intellectual disability, associated developmental delay and intractable epilepsy.

Her epilepsy is by far the most difficult aspect of her condition and if you could take away the epilepsy things would be almost normal, well you could cope with the rest.

She has had 5 trips to hospital this year and we have tried numerous new drugs, another new one to start soon. She is a happy and loving child when not affected by the side effects of unsuitable drugs and she is due to move from Special School to an IO support class at the local primary school next year. She loves the beach, her dog Simba, her specially modified bike and all outdoor activities.

I am the wife of Damien; hard-working dairy farmer and devoted Husband and Daddy. Unfortunately, I do not share my Husband’s passion for the dairy industry & spend as little time on the farm as possible!!
I am the mother of 2 gorgeous little girls; Lily (4 years) and Hope (1yr 9mths). Lily was diagnosed with TSC at 13 mths of age after having 4 tonic clonic seizures.

Lily has skin markings, brain involvement, epilepsy, visual impairment (left hemianopia) and developmental delay. Lily’s epilepsy is controlled, at this stage, after undergoing Neurosurgery 2 years ago. Lily attends a weekly EI Playgroup, a local 3 year old Kindergarten program and in her spare time has weekly Speech and Occupational Therapy appointments, regular trips to the playground, ED Gym and as much time as possible on the farm with Daddy and Hope! Lily is a delightful, little chatterbox who loves life! After such a bleak, uncertain TSC diagnosis, Lily has surpassed all our expectations and more. We are very proud of her and celebrate each and every one of her achievements, often with a tear in our eye.

Linda is married to Kevin and has a son Jordan who is 6, and a daughter Hayley who is 3. Hayley has Tuberous Sclerosis.

I first made contact with ATSS when Hayley was 4 months old. I was interested in finding out more about this condition and what I could expect in the future. I joined the committee after attending the Family Conference in August 2006.

We have lived with Tuberous Sclerosis for just over 3 years now, and received the official diagnosis when Hayley was 11 days old after we had seen seizure activity shortly after birth.