Survey Reveals Impact of Epilepsy on Men

Main Category: Epilepsy
Article Date: 19 Sep 2005 - 3:00 PDT

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An Epilepsy Action survey (1) has exposed a revealing insight into the lives of the estimated 225,000 males in the UK living with epilepsy. The findings indicate that the effects of the condition and its treatment can extend into several areas of men's lives, including relationships, parenting, sexual function, self-esteem, driving and employment.

In 2004, Epilepsy Action surveyed men living with epilepsy, to investigate how having epilepsy can impact on a man's life. The findings reveal that around half of respondents feel that the condition and its treatment affects their relationships with their partner (48.2 per cent), other members of their family (54.3 per cent) and friends (49.2 per cent). Over a quarter of respondents feel that their epilepsy and its treatment affects their ability to be a good parent, while over a third (37.3 per cent) feel that their sexual relationships are affected.

Recent studies have shown that there are almost 1,000 deaths each year as a result of epilepsy. Around 500 cases of these are due to Sudden Unexpected Death in Epilepsy (SUDEP). Although further research is needed, it appears that there are certain common factors that link many of the cases, one of which is being a young adult, particularly male.

Amanda Stoneman, Epilepsy Action's information services officer, said: "It is vital that men have a good knowledge and understanding of epilepsy, so they can make sure they are getting the best treatment. It will also allow them to make their own choices on how to live with epilepsy and reduce the risks of SUDEP, for example by ensuring that they take their medication as prescribed."

While there is a wealth of information available for women living with epilepsy, there is very little that is specifically aimed at men. Epilepsy Action has used the survey results to develop a new information booklet called 'Epilepsy and Men', which is designed to empower men living with epilepsy and to contribute to improving their quality of life.

Tom Smith, the Scottish international and Northampton Saints rugby star, who has had epilepsy for 15 years, said: "This booklet gives an insight into the real thoughts and feelings of men living with epilepsy. If you are a man with epilepsy, this booklet will help you to have a better understanding of your condition and to be aware of those times when it may be a good idea to visit your doctor."

The survey results also reveal that for a great many men living with epilepsy, the possible consequences of the condition, for example loss of a driving licence and restrictions on employment opportunities (2), can have a considerable social and psychological impact. For example, 72 per cent of respondents indicated that their epilepsy and its treatment affects their social life and activities; their confidence (77 per cent); their sense of self esteem (71 per cent) and their plans for the future (74 per cent).

Stephen Wiseman from Winchester, comments: "I feel that my epilepsy has affected many areas of my life: my career (being sacked from many jobs early in life because of falling over at work), my relationships with women, my sex life and drive, my social life and my ability to make friends because my confidence and self-esteem have been so low. But I won't let it beat me. I carry on and refuse to hide from the facts about my condition."

Copies of 'Epilepsy and Men' are available from Epilepsy Action's Freephone Helpline on 0808 800 5050 or via our website http://www.epilepsy.org.uk.

1. In 2004 a questionnaire was distributed to a random sample of 1,200 men who had contacted Epilepsy Action's Helpline in the previous year about their epilepsy. The sample was designed to reflect the geographic spread of the UK population. Details of the survey and invitations to participate were available in Epilepsy Today, Epilepsy Action's membership magazine, on the Epilepsy Action website and on the website's of Men's Health Forum and Male Health. 391 questionnaires were returned, of which 373 were usable. The response rate was 31 per cent.

2. Respondents to the survey indicated that their epilepsy and its treatment affects their employment opportunities (66 per cent) and their ability to drive (75 per cent).

http://www.epilepsy.org.uk