People with Epilepsy Enjoying Freedom from Seizures
Prevention and Treatment “Our aim with this patient version of the guidelines is to inform people about the standards of care in epilepsy, because if you don’t know what they are, you don’t know how to ask for them”
For most of her life, Lindsay Yeo, 38, lived with chronic seizures, a symptom of her epilepsy.
Unable to control them completely with various medications, she had surgery last November to remove a small part of the left temporal lobe of her brain — the area responsible for her seizures. Now seizure-free for more than three months, she sees a bright future ahead.
Epilepsy is a neurological condition characterized by unpredictable seizures that affects people of all ages. While about 70 percent of epilepsies have an underlying genetic component— as was the case with Yeo—the condition can also be acquired through infection, tumour, or brain injury.
Not knowing when the next seizure might occur makes day-to-day life challenging — and even risky. “Before my surgery, one of the biggest fears, especially for my parents, was what would happen if I had a seizure while crossing a busy street,” says Yeo. As a result, people with this condition often lead restricted lives and face limited job opportunities, social stigma, and isolation.
Seizure types, severity, and control vary from person to person. “People tend to think that all epilepsies are similar when in fact they can be quite different,” says Dr. Danielle Andrade, Medical Director of the Epilepsy Program at Toronto’s University Health Network. “Some are easier to treat while others are very difficult, and some also have comorbidities that can be more challenging to treat than the actual seizures.” These can include depression, memory problems, learning difficulties, behavioural problems, and even autism spectrum disorder.
About two thirds of people with epilepsy manage to control their seizures with medication — the other third have what is called drug-resistant epilepsy. Dr. Andrade stresses the importance of the latter group getting the correct treatment early on. “If these patients cannot get their seizures under control after trying two medications, they should be referred to an epilepsy centre and evaluated by an epilepsy specialist (epileptologist) to determine the best treatment option.”
New patient-friendly guidelines for epilepsy care available
New guidelines on epilepsy care indicate that surgery can be a good option for certain patients with drug-resistant epilepsy. It can reduce seizure frequency — or even eliminate them completely. However, until recently only about 2 percent of eligible candidates in Ontario had surgery, largely due to lack of clinical awareness.
EpLink, the Epilepsy Research Program of the Ontario Brain Institute, is working to get this information out to patients. Working with community partners and epilepsy patients, EpLink recently translated a comprehensive set of epilepsy care recommendations developed by the Epilepsy Implementation Task Force (a group supported by Critical Care Services Ontario) into an accessible patient version, available at ontarioepilepsyguidelines.ca.
“There are a lot of people who are not responding to medication who have been stuck in these diagnosis, treatment, referral paths for years or even decades,” says Dr. Amaya Singh, Neuroscientist and Knowledge Translation Lead at EpLink. “Our aim with this patient version of the guidelines is to inform people about the standards of care in epilepsy, because if you don’t know what they are, you don’t know how to ask for them.”
EpLink is currently involved in a broad-reaching campaign to promote these guidelines in the medical and patient community. “We want people to know that these treatment options are out there, so they can talk with their doctors and find out if they’re appropriate for them,” says Singh.