THE family of a young Edinburgh woman who has seen her life transformed thanks to help from The William Quarrier Scottish Epilepsy Centre wants to highlight the importance of accessing specialised care.
33-year-old Rachel Ferguson was born with a learning disability and was first diagnosed with epilepsy at the age of two. A virus at age 16 rendered her unable to sit up or swallow, over time she recovered, but her balance was badly affected, requiring support at all times and the use of a wheelchair on some occasions.
For 10 years Rachel lived independently with some support, enjoying a full and active life. However, following a move to a new flat in July 2015, Rachel’s health began to deteriorate, her mobility became limited and she suffered a bad fall, resulting in her losing a tooth.
At the same time, her epilepsy was worsening, prompting her parents to consult with the Learning Disability doctor who suggested she try a new drug. After a few weeks of taking the new medication Rachel’s eyes began turning upwards and her parents were advised she should take a further anti-epilepsy drug to counter this.
Eleanor Ferguson, Rachel’s mum said: “Rachel was regularly seeing her GP and the Learning Disability Team, but as she had previously turned her eyes up during epileptic activity, this was not registered as a new symptom.
“My husband and I were beside ourselves with worry. Rachel’s mobility became even more limited: she had previously been able to walk for one and a half miles with support, but could only walk a couple of yards. She now drooled and bent over when she moved, and developed a tremor in her arms which meant she had difficulty feeding herself.”
Rachel’s medical team believed that her brain didn’t have the resilience to cope with the changes in her life and her recent illnesses: they concluded her brain was effectively behaving like that of a much older person.
Eleanor added: “Rachel underwent a scan and an EEG which showed that while her eyes were rolling, she was not experiencing a seizure, and that she was aware of her surroundings while this was happening. The brain scan showed nothing to be concerned about.
“I searched for causes of eye rolling online and found that the most common reasons were headache, nausea and dizziness. As these were side effects listed on Rachel’s medication, it was decided that she should stop taking it. Her eye rolling very gradually improved, but she still had very limited mobility and continued to drool.”
The turning point in Rachel’s health followed her family requesting and being granted funding to go to The William Quarrier Scottish Epilepsy Centre in Govan, Glasgow. After an initial assessment in January 2017, Rachel was admitted to the centre for two weeks in March.
Dr Maria Oto, Consultant Neuropsychiatrist at the Centre said: “As epilepsy is extremely difficult to diagnose, many people who are admitted to The William Quarrier Scottish Epilepsy Centre have been taking prescribed medication for many years which may not be effectively treating their seizures.
“The specialist team at the Centre can support patients to reduce or even withdraw from medication in a safe environment where their seizure activity is closely monitored.”
The team at The William Quarrier Scottish Epilepsy Centre decided to significantly reduce the dose of some of the drugs that Rachel was taking and introduce a new medication as well as closely monitoring her seizure activity.
Eleanor said: “The improvement in Rachel’s condition was miraculous. She was now walking upright, her face was alert and animated again and the drooling and tremor in her arm had stopped. People who knew Rachel couldn’t believe the difference.
“After a further two-week stay, Rachel showed even more improvement. She has far fewer seizures and is now much more active and has built up her strength. She has more energy and is able to enjoy being out in the evenings again. She can even walk up to two-and-a-half miles with support, and enjoys swimming and trampolining. Above all, she is able to enjoy her life again.”
If you, or a loved one, requires support from The William Quarrier Scottish Epilepsy Centre, please obtain a referral by a consultant associated with epilepsy care. The Centre can also accept referrals from other medical practitioners in some circumstances.
For further information about The William Quarrier Scottish Epilepsy Centre please visit http://scottishepilepsycentre.org.uk/ or email firstname.lastname@example.org