Transcript Lysbilde 1
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 • 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 sexuality Eriksen, 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 . 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% Høie et.al 2006 Population .based studie from Hordaland, Norway including all children with epilepsy born 1982-1988 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_Xtgs aPedM 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? 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… The good circle for young people with epilepsy succeeding Selfconfidence Competance Empowerment knowledge