Epilepsy - living with epilepsy
epilepsy; seizures; fits; convulsions; school; driving; career; absence
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Contents
The effects of having epilepsy differ for different people.
- If they have just recently developed epilepsy, they have to adjust to being someone who may have to take medicines forever, and to not always being in control of their body.
- If they have had epilepsy for a while, they may have lost confidence in their ability to manage on their own if they have been over-protected by their parents.
- They will also need to deal with a society which often tries to stop them from doing many things, and limits their choices in life.
- Sometimes people with epilepsy will try to hide it, or they may decide they will reject others before being rejected themselves.
- Side-effects of their treatment may affect their appearance, and their self-esteem may be so low that they do not take care with their clothes and hair.
- Some people have even learned to use the possibility of having a seizure to get their own way at home and to avoid work at school!
School
- If you had epilepsy when you were at primary school, you would have felt pretty safe because all the teachers and probably all the kids in your class would know how to help you if you had a seizure.
- At high school, if you have epilepsy and you take medication because you might have a seizure, the school staff need to know, so that they can work out with you what to do if you have a seizure.
- If your medication is controlling your epilepsy, then maybe not everyone needs to know. Perhaps your Pastoral group teacher, the school nurse or first aid officer, your P.E. teacher, and any teacher in practical areas like Science, Home Economics or Technical Studies will have to know, so that they can help keep you safe.
- Probably there will be a photo of you in places like the staff room, canteen and library where staff can see it, so they will know who you are, and how to help.
- People who have epilepsy often (but certainly not always) have some difficulties with learning.
- Side effects of some medication can affect how well you can concentrate.
- You may have missed a lot of early learning, from time away from school due to health problems. This may not be obvious at primary school, but without the 'foundation' skills and knowledge, it can be difficult to keep up at secondary school.
- To parents and teachers, it might seem as if you are lazy and not trying.
- A special education teacher may be able to help you work out a learning program so that you can do your best without too much pressure. However, it is also important to be aware that learning and attention problems are common, and may not be due to your epilepsy.
Physical Education
- There are many kinds of physical education programs, and students with epilepsy should be able to safely take part in a wide range of activities, even if they are still sometimes having seizures.
- Sometimes some changes will need to be made to the programs, and it is reasonable to expect that the school will make efforts to be inclusive.
- If seizures are fully controlled, almost all activities should be possible, although swimming and rope climbing should always be carefully supervised. Have a look at some 'Water safety' guidelines (link below).
It is very important that young people are not excluded, because of fear or ignorance, from safely taking part in activities which they are capable of.
Driving
- Driving a car may not be allowed if seizures have not been under excellent control (eg. no convulsions for 1 to 2 years). It is essential to talk to a doctor about the limits on driving.
- All states allow people with epilepsy to drive after a period of time (between 3 and 24 months, depending on their circumstances) in which they have had no seizures, and if their doctors will attest (sign a written statement) to that fact.
- Have a look at the Australian Guidelines (link below).
Sex and pregnancy
An unplanned pregnancy can be a major problem for both the mother and the developing baby. In almost all cultures, young women are at risk of pregnancy well before their parents are ready to recognise it.
- Young women with epilepsy need good information about contraception, and knowledge about any risks from their medication if they do become pregnant, well before they start sexual relationships, since some medication used for epilepsy can affect the development of a baby.
- Using a condom is safe and effective if used correctly - and condoms give protection against many sexually transmitted diseases.
- The emergency contraceptive pill (ECP, 'morning-after pill') can usually be taken.
- If a young woman becomes pregnant while taking medication for epilepsy, it is important to continue taking the medication until she sees a doctor, because stopping abruptly can trigger a convulsion. Most medication will not harm the baby, but it is very important to seek medical advice about this.
Family rules
- All young people need to work out reasonable ground rules with their parents about things like what time is it reasonable to expect you to come home, who drives, use of alcohol and tobacco, etc.
- Generally these rules could be the same as those that your friends have. Having epilepsy does not need to be a reason for really strict rules.
Career Planning
Most people with epilepsy are successfully employed in a wide range of jobs. However, there are some limitations.
- A person who is having some seizures will have to avoid jobs that require driving a car, bus, truck, etc. as part of the job.
- The issue of safety on the job (for instance if there is a need to handle machinery that is potentially dangerous) is one that you will need to consider carefully when planning your future career to avoid a disappointing job search.
- People who have an occasional seizure or brief absence seizures a few times a day could do well in jobs in which there is time to make up for a few lost seconds or minutes (such as administration jobs, computing, etc).
When epilepsy is completely controlled, there are very few fields that are closed by law.
Further reading
Resources
South Australia
References
Epilepsy Information pages on the Epilepsy Association of SA and NT web site
http://www.epilepsycentre.org.au/
Gellerstedt, E. 'Seizures' in Garfunkel et al (Ed), 'Mosby's Pediatric Clinical Advisor', Mosby Inc 2002
National Institute for Clinical Excellence (UK) 'The diagnosis and care of children and adults with epilepsy: information for people with epilepsy, their families and carers, and the public' October 2004
http://www.nice.org.uk/nicemedia/pdf/CG020publicinfoenglish.pdf
Links
Epilepsy Action Australia
http://www.epilepsy.org.au
Epilepsy Action (British Epilepsy Association)
http://www.epilepsy.org.uk/
Epilepsy Foundation of America
http://www.epilepsyfoundation.org/
The information on this site should not be used as an alternative to professional care. If you have a particular problem, see a doctor, or ring the Youth Healthline on 1300 13 17 19 (local call cost from anywhere in South Australia).