Sex, drugs and lifestyle choisesWhy are the problems so common and how can we help resolve
it?
Stine Jakobsson Strømsø Nanette Mia Bohn
Norway
Stine
• Secretary general in the Norwegian Epilepsy Association
• Also…• Wife, mother, friend
and patient with epilepsy
Outline
• Data/surveys• Stories from the young people themselves• Braking barriers and old routines
What do we know today?
• Problems withself-esteem• Issues withsex/sexuality• Epilepsy is a very difficult diagnosis for
young people with big impact on lifechoises
Population based studies regarding young people with epilepsy
• Prevalence 6,4 - 11,6 /1000• Low expectations to the children who have epilepsy • Lots of tension in the families• Less active, more isolated, are more bullied and have
a significantly increased risk of depression
SEX• Increased risk ofstaying or becomming single• Surveys indicate
– Problems with erectale function– Problems with fertility
• But…– Increased libido– Hypersexuality
• Huge variation• Refractory epilepsy are associated with even bigger problems
regarding sex and sexuality• We assume that people with a well regulated epilepsy have
fewer problems regarding sex and sexualityEriksen, et.al 2004
Risk related behaviour in teens with epilepsy
• A prevalence of 11,4 /1000• Signifcantly higher risk of cannabis use: 15,5% vs. 9,2%• Significantly higher risk for use of narcotics in tablet form: 10,5%
vs. 5,8%• Significantly higher risk for use of narcotics in intravenous form:
5% vs. 1%• ”I have been really drunk more than ten times” : 21,3% vs. 9,6%• I drink ”soft pop” (rusbrus) more than once a month: 21,3% vs.
9,6 %• ”I have broken and entered”: 11,2 vs 5,8 %• Population based study in Akershus, Norway, Lossiuset.al. 2004
Psychylogical and cognitive problems in childrenwithepilepsy
Høie et.al 2006Population based studie from Hordaland, Norway including all children with epilepsy born 1982-1988
Children with epilepsy100%
Serious non-verbal problems (SNVP)
39%
Three problems 5%
One problem24%
No problems19%
Two problems13%
.
Control group100%
Serious non-verbal problems (SNVP)
3%
Three problems 0%
One problem26%
No problems68%
Two problems 3%
.
Results cont.
• Psychososial, cognitiv and excetutive funtion-problems are common in children withepilepsy
• Psychosocial problems are seen in 46% of children with epilepsy when children with epilepsy and SNVP are excluded.
What does these surveys tell us?
• Support system• Adequate information re. Epilepsy• ADL-support• Help to find the right career• Help to find friends• Good role models
• http://www.youtube.com/watch?v=m_XtgsaPedM
Are the seizures our biggest problem?
• Education/work• Loneliness• Side effects from AED´s• Cognitive problems• Stigma• Not enough knowledge about epilepsy in the society• Psychosocial issues?• Over protection?• Other problems?
No, of course not…
Createyourself!
• What are your strengths?
• What is succeding for you?
We all have a picture of ”the perfect person” – do you know anybody like that?
Work
• ”What do you do?”• How do you
maintain and create social relations when you are unemployed?
• Who is the master of your life?
What we think transelate to others…
”I feel so sorry for the people with epilepsy. It must be a hard life”.
Meeting a teenager withepilepsy
• Think about solutions– The strong points– The positive sides
– Focus on their wishes and beliefs – they probably know more about their own life than what you do…
– Focus on courage and empowerment• The parents doesn't always know what's right…
Self-confidence
Empowerment
knowledge
Competance
succeeding
The good circle for young people with epilepsy