EMILY Edward is a young lady very accepting of her epilepsy, but she is also very passionate about her doctors having the best equipment.
The 16-year-old was diagnosed with the condition last year when she started having hand jerking movements, despite experiencing “absence seizures” since she was 10 or 11.
“I was diagnosed in Perth and we moved here and the doctors here have been wonderful,” Miss Edward said. “They’ve been trying to get my medication right but it’s a matter of trying different medications to find the right medication and the right dose for my body,” she said. “I did notice a difference in the equipment from Perth to Cairns and that’s why I think everyone should support the Wayne Leonard’s Motorcycle Muster this year,” she said.
This year’s Muster, in its 17th year, is fundraising for EEG equipment at Cairns Hospital and will head to Undara Lava Tubes this month (October 20-21). Cairns Hospital Neurologist Dr Ian Wilson said the latest EEG imaging equipment would provide substantially improved high resolution cameras, screens and software with the latest recording technology available. “Emily will need EEG monitoring about every 6-12 months or whenever her epilepsy is not well controlled. The EEG tells us if she has developed a different type of epilepsy and if Emily needs her medication altered again. This can happen as the brain continues to develop into adulthood,” Dr Wilson said.
Approximately 5% of people with epilepsy have Absence seizure and 10-15% of children will develop other seizure types in adolescence, generalised tonic-clonic and/or myoclonic seizures.
“The EEG equipment is used to monitor people with epilepsy and other brain conditions in our clinics, but also in Emergency and ICU to assess brain activity in unconscious patients, including after traumatic brain injury,” Dr Wilson said. “Patients having repeated, unexplained events may undergo day-long (sometimes over several days) EEG testing to ‘catch’ the event and determine if the brain activity changes and is abnormal during the event, while others simply have a “snapshot” 30 minute recording of brain wave activity,” he said.
Heart-breakingly, babies and small children are among their patients – some of whom have genetically acquired conditions that impact on the brain’s development and cause severe seizures. Diagnosing and treating the seizures early is important to prevent further brain injury and give the child the best chance of recovery. The equipment also will be a vital tool in future research projects.
Foundation CEO Tony Franz said it was hoped to buy two EEG’s at a total cost of $70,000. “This year the Muster is heading out to Undara on the weekend of October 20-21, and there is a lot of excitement among the riders about this trip,” Mr Franz said. Himself a participant, Mr Franz said the ride had not been to Undara for several years, and it was sure to be a fun and enjoyable weekend. “The people who take part in this event do so for the right reasons – because they are passionate about supporting health services in this region,” Mr Franz said.
The Wayne Leonard’s Motorcycle Muster will head to Undara Lava Tubes October 20-21. All vehicles and motorcycles are welcome to take part. Visit HERE.
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