I was born in 1987 in St Thomas’ Hospital in London, England. 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 Australia 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 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 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.