Epilepsy, an invisible disease that impacts life
Epilepsy is a disorder of the central nervous system characterized by the recurrent and spontaneous occurrence of seizures. A seizure is caused by a sudden, abnormal electrical discharge, like a short circuit, at the level of the cerebral cortex. It is one of the most common chronic neurological conditions - one in 20 people will experience an epileptic seizure at some point in their life and one in 150 people has active epilepsy. Epilepsy is generally treated with anti-seizure medication (ASM). This can reduce the frequency of seizures or stop them altogether. The choice of ASM depends on the type of epilepsy, the type of seizures, and the individual medical situation of the patient. However, approximately 35% of people with epilepsy do not achieve seizure control with medication.
The invisible impact of epilepsy
Epilepsy is more than just the seizures themselves; it has a major impact on daily life. For many people with epilepsy, the greatest challenge lies in what others do not see: the constant uncertainty, fear, and limitations the condition brings, even on seizure-free days. Epilepsy is often accompanied by concentration problems and memory loss. People with epilepsy too often avoid social situations due to fear of seizures and the risks associated with falling. There also are the unwanted side effects of medication: fatigue, mood swings, dizziness, depression.
How epilepsy response/alert dogs help
Another support for people with epilepsy is an epilepsy assistance dog. This type of assistance dog is carefully screened and trained to support a person with epilepsy and to reassure the environment. As a seizure response dog, the dog helps during and after epileptic seizures: it protects during a fall and can bark during the seizure to help the person regain consciousness more quickly; afterward, the dog can assist by fetching medication or help (via phone, a caregiver, etc.). The presence of the dog provides a sense of safety for both the person with epilepsy and bystanders, reducing anxiety and uncertainty. Over time, the dog may possibly evolve into a seizure alert dog: it will sense an oncoming seizure and warn its handler. This ability can emerge and further develop through the strong bond and close cooperation between dog and handler. Overall, the presence of the dog brings calm and helps stabilize the situation, resulting in less stress and more opportunities to simply participate in everyday life.
How and for whom?
ADI accredited member organization Hachiko VZW in Belgium trains epilepsy assistance dogs. The training consists of an approximately 1.5-year period in a basic training program with a puppy living with a foster family, followed by a final training phase of about six months at Hachiko’s training center. During this phase, the dogs are continuously screened while developing their talents and specifically required skills. The training trajectory with the handler is highly individualized. It is important that dog and handler can train together sufficiently within daily life and real-life situations. A number of conditions are essential: the person must be diagnosed with medically confirmed epilepsy and must not have been seizure-free for at least two years. The training program requires a high level of commitment and sufficient physical and psychological resilience. Cognitively, the person must also be able to process the training and consciously work with the dog so that a strong bond can be built. Reinhilde, a client matched with an epilepsy assistance dog from Hachiko, describes the benefits of her dog, “I was diagnosed with epilepsy in 2010; medication turned out not to help. I could no longer go anywhere safely, and I didn’t dare to anymore. Medically retired, no driving, no more swimming, not bathing alone, … that weighs heavily. Thanks to Era, I was able to flip the switch in my head. She reacts immediately during a seizure: fetching the phone and a bottle of water, helping me get back up with a tug. I can’t imagine life without Era anymore. She is not just a dog.”
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Sandra joined Hachiko at the end of 2019 when the organization moved into a new centre. Hachiko is a small sized Belgian charity founded in 1994. Our expertise lies in training and
placing assistance dogs for people with physical disabilities, autism or epilepsy. Hachiko also trains facility dogs for care organisations (such as retirement homes), and is a pioneer in the European Victim Support Europe (VSE) program for professionally trained dogs in victim support.