Text provided by kind permission from The Herald. Article written by Karen Peattie.
Working in a hands-on role for a charitable organisation can be tremendously fulfilling, and for Lanarkshire based Helen MacDonald, an epilepsy fieldworker with Quarriers, it is also an immensely challenging job with no two days ever the same.
An epilepsy sufferer herself, Helen is arguably better placed than most to understand the problems and frustrations associated with the condition. Yet she would never presume that she knows what other sufferers are feeling just because she has experienced epilepsy herself, and even undergone temporal lobectomy surgery which has seen her seizure-free for the last 11 years.
She explains: "It is impossible to compare individual sufferers because one person who might have as many as 10 seizures a week could cope very well, and still manage to hold down a full-time job, while someone who only has one or two could really struggle and suffer from embarrassment and low self-esteem. Epilepsy is a complicated condition."
Helen, who previously worked for Epilepsy Scotland, has been an epilepsy fieldworker with Quarriers since 2000 and now covers the Lanarkshire area. Quarriers, a long-established registered charity, has the only epilepsy assessment centre in Scotland and has a key role to play - nearly 40,000 people in Scotland are affected by the neurological condition which can present itself in more than 40 different seizures, and people can have more than one type.
"Obviously, I have a personal interest in developing services, and what we have to get over is that epilepsy doesn't only affect the person who has it, but their family and friends as well." Helen says. "Approximately one in 133 people has epilepsy, and in children that figure is one in 100, with 75 per cent having their seizures controlled by medication."
"There is much more information and ongoing research being done regarding epilepsy now," Helen points out, "but very little tends to reach the people who really need it - the patients themselves, their families, teachers and GPs."
"Epilepsy can develop through neurological problems, including cerebral palsy, brain injury, blood clots and strokes, and also from drug or alcohol abuse. However, 60 per cent of people have idiopathic epilepsy, in which no cause is identified."
"Epilepsy fieldworkers like me deal more with the social issues surrounding the condition," she continues.
"Many people have problems affecting relationships, education or employment as a result of epilepsy, and might have low self-esteem and feel embarrassed about their condition, and many have memory difficulties. For others, having the actual seizures is not the biggest problem - it is the associated social problems and even the stigma that can surround epilepsy that they struggle to cope with."
As well as helping adult epilepsy sufferers to live as normal a life as possible, Helen is also currently working to raise awareness of epilepsy in schools. "In many schools, teachers are not trained to deal with pupils with epilepsy, and very quickly a child will stand out," she says. " What we are finding is that children can be a great help to each other if they know what to do in an emergency and understand more about the condition."
"At the moment, I am working with secondary schools in North Lanarkshire to provide epilepsy awareness and first aid training for pupils and staff, and I am finding this extremely rewarding."
Helen's role is also to promote the well-being and welfare of people with epilepsy, liaise with healthcare professionals, provide epilepsy awareness and first aid training, memory awareness training and supply up-to-date information and support for clients and their families.
She also helps people to make informed choices as well as supporting them in having their voice heard on various platforms.
For many sufferers, the condition can represent a longterm disability. Helen had her first seizure when she was 23, although she was not aware that she had epilepsy until her diagnosis seven years later.
"The first seizures only gave me a brief feeling of deja vu but had an enourmous effect on my memory," she says.
"This began after the birth of my second child and my GP sent me to see a hormone specialist, assuming this to be the reason for the problem."
As Helen's difficulties and tiredness increased, she was having up to 10 seizures each week, causing her to lose interest in a lot of aspects of everyday life. Eventually, she had a more serious seizure and was told to stop driving.
When she was diagnosed with interactable epilepsy, having seizures repeatedly which could not be controlled by medication, she was offered temporal lobectomy surgery. "I had the surgery in 1995 and have been seizure-free ever since," she says. "I can drive again and am no longer on medication. It has been a lifechanging experience."
If, however, Helen had had more help and support, the road to recovery would have been an easier one, she says. In her current role as an epilepsy fieldworker, she is delighted to be in a position to provide that help and support.
"We get referrals from families, carers, teachers, employers and GPs. Awareness is definitely improving, but it is an ongoing process, and I am so pleased to be able to make a difference and help people live a normal life even after being diagnosed with epilepsy."
