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