A therapy service centre with links to the Brighton and Sussex Medical School (BSMS) is launching a crowdfunding campaign in March, with the aim of offering therapy to patients worldwide who suffer from drug-resistant forms of epilepsy.
Biofeedback Global was founded by Dr Yoko Nagai, a neuroscientist based at BSMS. She is a leading global authority on using behavioural therapy, involving galvanic skin response and electrodermal activity biofeedback, to address epilepsy. In 2016, Dr Nagai received the Clinical Science Gowers Award from the International League Against Epilepsy, UK, in recognition of her ongoing research to better understand mind and body interaction in epilepsy. Over 20 years of working with people with the disease, she has developed a drug-free, self-directed and non-invasive programme for drug-resistant epilepsy; ACRT.
ACRT – or Autonomic Cognitive Rehabituation Training – is a holistic method that explores the patient’s specific physical and neural mechanisms, alongside their lives outside of the neurological clinic and the potential underlying emotional causes behind their seizures. It then provides the patient with a learned set of skills to anticipate and prevent them from happening.
"My epilepsy more or less came out of the blue," says Michael, one of Dr Nagai’s patients in Brighton. "Despite being on medication for the past six years, I continued to have between three and six seizures a month. I lost my driver's licence, and as a self-employed carpenter this had a huge impact on my work... The first time [trying ACRT] it was quite tricky, but after a few sessions I really got the technique. Now I'm very happy to be seizure free, and I hope to reduce my medication in a couple of months."
The money raised during the campaign will help fund the development of an online platform to offer a global audience of patients and carers access to ACRT. It will also help to formalize the delivery of Biofeedback Global's complete therapy course, and start to create a work opportunity for people with epilepsy who are keen to help others. Rewards for backing the campaign will include early access to therapy via the new platform, and one-to-one ACRT sessions with Dr Nagai.
One in every hundred people suffer from epilepsy, and one in three of those are unable to safely manage their condition with drugs, due to side effects or resistance. This means that there are tens of millions of people worldwide whose lives are dominated by their seizures. Career choices may be limited, not just by genuine safety considerations, but also by social prejudice. Even the simple pleasures of socialising with friends can be a real challenge.
"The ability to better manage seizures without the use of drugs could have a truly life-changing impact for a huge community," said Dr Nagai. "Seizures are usually the source of a great deal of anxiety and frustration for patients with epilepsy. ACRT can help rebuild their confidence and self-esteem, and offer them the chance to lead a freer and fuller life."
"That's why we're asking for support, in order to make the therapy more widely available and help many more patients take back control. Our ultimate goal is to offer job opportunities for patients, and create a community of support so that no-one with drug-resistant epilepsy feels as if they have to face things alone."