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Sex, drugs and lifestyle choises Why are the problems so common and how can we help resolve it?

Sex, drugs and lifestyle choises Why 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

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Sex, drugs and lifestyle choises Why are the problems so common and how can we help resolve it?

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  1. Sex, drugs and lifestyle choisesWhy are the problems so common and how can we help resolve it? Stine Jakobsson Strømsø Nanette Mia Bohn Norway

  2. Stine • Secretary general in the Norwegian Epilepsy Association • Also… • Wife, mother, friend and patient with epilepsy

  3. Outline • Data/surveys • Stories from the young people themselves • Braking barriers and old routines

  4. 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

  5. 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

  6. 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 sexuality Eriksen, et.al 2004

  7. 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

  8. . Children with epilepsy 100% Control group 100% Serious non-verbal problems (SNVP) 39% Serious non-verbal problems (SNVP) 3% Three problems 5% Three problems 0% Two problems 13% Two problems 3% One problem 24% One problem 26% No problems 19% No problems 68% . Psychylogical and cognitive problems in childrenwithepilepsy Høie et.al 2006 Population based studie from Hordaland, Norway including all children with epilepsy born 1982-1988

  9. 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.

  10. 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

  11. http://www.youtube.com/watch?v=m_XtgsaPedM

  12. Are the seizures our biggest problem? No, of course not… • 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?

  13. 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?

  14. Work • ”What do you do?” • How do you maintain and create social relations when you are unemployed? • Who is the master of your life?

  15. What we think transelate to others… ”I feel so sorry for the people with epilepsy. It must be a hard life”.

  16. 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…

  17. The good circle for young people with epilepsy succeeding Self-confidence Competance Empowerment knowledge

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