Events Personal Stories Learn more about tuberous sclerosis without leaving home TSA has received a grant to pilot putting our popular education events online. We know that not everyone living with TSC wants to meet others face to face and not everyone can travel to the locations we hold our events. We want to see if a virtual event, such as a webinar or teleconference, is an effective way to help people with TSC improve their knowledge of the condition in a way that helps them manage their TSC. We plan to hold two online events over the next six months. We want your input to make sure we get the topics and logistics right. Contribute to our <strong>2016</strong> survey at www.tsa.org.au/survey We look forward to having you join one of our online events soon. Save the Date: May 14th and 15th 2017 <strong>Tuberous</strong> <strong>Sclerosis</strong> Complex Global Awareness Day will again be held on May 15. Our <strong>Australia</strong>-wide picnic day will be Sunday May 14. Check out the next issue of <strong>Reach</strong> <strong>Out</strong> for all your global awareness day information. Hiatt family opens QLD disability conference In August, Fiona and Mark Hiatt opened the networking session of the Queensland Disability Conference in Cairns. They spoke about their experiences as Alex’s parents and how they have worked with various organisations to support him. Alex Hiatt, who has TSC, also The annual general meeting (AGM) of <strong>Tuberous</strong> <strong>Sclerosis</strong> <strong>Australia</strong> Inc was held on September 18 in Sydney. The event celebrated the achievements of TSA during the 2015/16 year and was a great chance to discuss the work planned for <strong>2016</strong>/17. Thank you to everyone who came along and enjoyed a light supper afterwards. Enclosed with your printed copy of this issue of <strong>Reach</strong> <strong>Out</strong> is a copy of our annual report. The report summarises our work for the year and explains why your financial support is so important. All of our annual reports can be viewed online at: www.tsa.org.au/about-us/ annual-reports/ had several of his artworks exhibited as part of the conference. Thank you to Fiona, our regional contact in far north Queensland, and the Hiatt family for their continued work raising awareness of TSC. You can learn more about Alex at www.tsa.org.au/alex Successful AGM and dinner event in Sydney Members of the management committee: Michelle Purkiss, Debbie Crosby, Michael Jones, Alison McIvor Alex Hiatt with Hon Coralee O’Rourke, QLD Minister for Disability Services Just Between Us TSC and Epilepsy Oliver’s TSC Story was born in 1987 in St Thomas’ Hospital in London, England. I When I was seven months old I started having infantile spasms. My mum had to fight to get medical attention for me as I seemed to stop having the seizures as soon as there was a doctor in the room! She remembers saying “I am not leaving this hospital until I know what is going on,” despite being assured by the doctors and nurses that I was a normally developing baby. Eventually I was admitted and tests revealed the TSC tubers in my brain and the ash leaf patches on my skin. This led to a diagnosis of tuberous sclerosis complex (TSC). They also found a non-aggressive tumour behind my heart, which I now believe must have been a rhabdomyoma. My epilepsy was treated with Valium (diazepam) injections and I was eventually seizure free for 15 years. Mum recognised that I was not meeting my developmental milestones, as a baby. She implemented a type of therapy for me called patterning*. This improved my motor skills and we believe it also helped my brain to develop. Mum and I moved to <strong>Australia</strong> and I completed my education in Tamworth, NSW. I was teased and picked on at school, including for my facial angiofibromas. I knew that this was because of my TSC but the kids at school did not. After 15 years seizure free I started to have gelastic seizures, commonly known as laughing seizures. I also developed complex I try hard to have a positive outlook and I believe life is meant to be enjoyed. partial seizures and would generally have seizures when I had a high fever when I was sick. A new medication, Zonegran (zonisamide), was introduced to help with these. I moved to Brisbane in 2008 and this was an arduous and stressful time in my life. I had my first generalised tonic-clonic seizure (previously called a grand mal seizure) around that time and a new medicine was introduced, Lamictal (lamotrigine) and since then I have not had any major seizures. I have found a great neurologist and GP here in Brisbane and they are a great help to me. Because of my history of epilepsy, I cannot drive and catch public transport everywhere. The doctors tell me that I will be on my epilepsy medication my whole life. I know that anything can change in the future, so I’m not so sure of that. At the moment though, as long as I take my medication I do not have seizures. Overall I would describe my experience with TSC and epilepsy as humbling. I am on my journey with these two conditions and it is not easy. I do have my down days when I find out bad news related to my health. For example, we are now watching the slow growing, non-aggressive tumours in both my heart (rhabdomyomas) and my kidneys (an angiomyolipoma or AML). However, I draw inspiration from others I know with epilepsy and/or TSC. This includes David Matheson (a TSA volunteer), who is an inspiration to me. I try hard to have a positive outlook and I believe life is meant to be enjoyed. I play the drums, including the conga drums. I am an active member of my church community and my faith in Jesus helps me through the struggles I have with my TSC and epilepsy. I volunteer my time with Epilepsy Queensland doing paperwork and I am also a member of their epilepsy support group. I eat very healthily and am famous for my salads. A recent achievement I am proud of is buying my own house along with my Mum. I want to meet others with TSC and look forward to working with TSA to form a young adults support group. For more information on patterning, please see www.researchautism. net/interventions/17/patterning-therapies-and-autism. 6 <strong>Reach</strong> OCTOBER <strong>2016</strong> ISSUE 104 <strong>Out</strong> 7