Scotland's invisible epilepsy epidemic

It was once known as the Sacred Disease. Its sufferers were revered and stigmatised in equal measure for their supposedly divinely ordained condition. Julius Caesar, Peter the Great, and Byron are just a few of the best known historical figures to have had epilepsy.

But for the many over-65s in Scotland who are increasingly being diagnosed, their condition is far from a gift from the gods. Pensioners are currently part of an invisible epidemic which is largely either misdiagnosed or ignored. They make up Scotland's fastest growing group of people with epilepsy - a "demographic time bomb" which is due to grow inexorably as our society ages. Research suggests that there may be as many as 1,650 new cases of epilepsy in Scotland each year in people aged 60 and above.

Doreen Jobson, 69, from Bishopbriggs, East Dunbartonshire, is one such person who developed the condition later in life. espite the challenge of dealing with the sudden onset of epilepsy, she looks remarkably fresh faced for a woman who is almost in her seventh decade. Her kind, unlined face, which usually features a thousand-watt smile, obscures the trauma she faced when she suffered her first grand mal attack.

Doreen said: "After the attack, I was given a number of tests and an EEG which couldn't find anything. They just don't know why the condition appears in some people and not others. The attacks themselves were very frightening. I get a warning of a few seconds and then I'm totally unconscious. It's very disorientating and it can take a few minutes after the attack before I'm fully aware of my surroundings."

Epilepsy facts

Epilepsy is a neurological condition characterized by recurring seizures

A seizure is a brief disturbance in the electrical activity of the brain

The most common prescribed treatment for epilepsy is daily medication

In some patients, vagus nerve stimulation treatment may reduce the frequency of seizures

Brain surgery may be performed if seizure activity is confined to a limited area of the brain

She had her first grand mal seizure in bed, leaving her husband fearing the worst. He called an ambulance believing that she was in the midst of a heart attack. Doreen lost consciousness, began twitching violently and was covered in blood. It emerged later that she had bitten her tongue.

Grand mal seizures, occasionally known as a tonic-clonic seizures, are characterised by just such a loss of consciousness and violent muscle contractions. They are caused by abnormal electrical activity throughout the brain, so signs and symptoms can be seen across the whole body.

She said: "Eventually I was told I had epilepsy and I was totally taken aback. It was like a bolt from the blue when I was diagnosed. I thought that epilepsy was something that you were born with. I was dumbstruck because no-one in my family had ever had it and to be honest, I knew nothing about epilepsy. I had been feeling odd and kept getting a funny feeling of déjà vu. I had some symptoms for about two years but often the feelings would disappear after a few minutes. I went to the doctors and they said there was nothing wrong with me. I was eventually given tranquilisers which I declined to take."

Like many others, Doreen was diagnosed with epilepsy later in life Misdiagnosis is a major issue and bodies such as Epilepsy Scotland estimate that epilepsy has a misdiagnosis rate of about 30%. Technological advancements in medical imaging mean that diagnosis is becoming more accurate but not all health boards have access to the expensive equipment.

Despite the scale of the social issue of older people with epilepsy, it has rarely been investigated.

One study, however, found that older people with epilepsy diagnosed in later life were more anxious and depressed than those diagnosed earlier and their overall perception of quality of life was more likely to be negative. The report's authors called for far more work into the "psychosocial consequences" of the condition on older people.

However, Doreen does not look like someone who has been frightened into submission by the relatively late and unexpected arrival of her condition. She is far from helpless: she worked for many years as a medical secretary and maintains a business-like air, coming across as both efficient and eminently capable. As an active member of the local church, she still has a busy lifestyle and has only had to give up one beloved activity - driving.

She said: "It was a nuisance especially when the kids were younger because I couldn't drive them around the way I used to. I don't let it get in the way of me living a normal life. I am actually grateful that having epilepsy has raised my awareness of the condition and its treatment."

Coping with both old age and epilepsy is undoubtedly a challenge, but the slowly growing clamour for improved services and heightened awareness means that many have been left with that most important factor: hope.