Every year, 5,000 Swedes fall into epilepsy, a disease in which hyperactive brain cells cause unpredictable attacks with sensory sensations, unconscious and muscular torsos that, in exceptional cases, can be fatal. There is nothing observed between the attacks, but for the 81,000 people who live with the disease of life, uncertainty affects all aspects of life.
– Epilepsy does not allow me to drive, have a normal job or plan family life in the same way as everyone. Attacks can arrive at any time. So, for example, if I want to have a coffee with a friend, I have to keep in mind that I can get a five-minute crisis before and then I have to stay home, says Anna Eksell of Götene.
He got his diagnosis when he started the first class. Today he is 39 and has learned to live with daily attacks that can lead to everything from strong beats to absence attacks for an hour.
But the hardest thing has not been the physical limitations of the illness, but to have adequate care.
– When I was a child, care was good, but as an adult, I have never been called a neurologist or general practitioner to check the antiepileptic concentration in the blood or the liver's values. There is no routine about how to follow up on patients with epilepsy. Everything ends up in the sand and if you want to change the medication or check how you feel you have to stay with yourself, says Anna.
During the spring, the Swedish Association of Epilepsy conducted a survey that confirmed the image of Anna on the care of epilepsy. Although it is the most frequent nerve disease in Sweden, the result shows major flaws.
Almost 40 percent declare that they have an inadequate seizure control and every fourth that suffers from side effects is much or more annoying about their medication. There are consequences that are natural in the process of finding a functioning treatment, but since a large proportion of respondents has been in unchanged treatments between 1-3 years, the result is disturbing, says Anna, who also presides over the juvenile section of the union
– Anti-epileptic detects the brain and causes its impulses to be less pronounced, but will also slow down the head. I feel insomnia for a few nights due to the darkness of my arms and legs, but because I found a medication that keeps the attacks under control, I can not try to change it. It takes a lot of strength, says Anna.
Among the respondents, there is also considerable dissatisfaction with how to experience the health commitment. Contact with doctors in many cases is scarce and the proportion they feel involved in their treatment or believes that cure continues with side effects is considerably higher in groups that have minor problems. However, those who suffer serious problems are increasingly more and almost a quarter of those who participated in the survey seem to be not involved in their treatment or in any way.
– Doctors would have wanted to focus on more than just medications. In general, it has become better, but it must also be more nationally focused on things that are linked to being human and not just to medication. You have to spend a complete dream at the health center to find a good person that understands the whole image, says Anna.
Among other things, you have shown that depression is frequent amongst patients with epilepsy. If it depends on the disease or the medication it is difficult to say, but there is a connection obvious, Anna thinks she should look for curators alone.
– It can be more rewarding to have a conversation with yourself in front of the mirror than to find a doctor. Attention does not always understand the whole concept. Epilepsy is much more than a seizure. They do not usually get the support you need.
New guidelines on G
In 2019, it is hoping that the new guidelines of the National Council of Health and Welfare of the care of epilepsy will be applied. In the background, it is admitted that the current epilepsy care is deficient and inequitable, partly due to insufficient knowledge and access to effective methods of diagnosis and treatment.
The new directives emphasize, in particular, the importance of obtaining a proper diagnosis, a correct follow-up that includes continuity in health contacts and a multiprofessional team that is taking place. In addition, it is also emphasized that people with epilepsy and intellectual disabilities or another permanent disability need an improved ability to interact with other health services. Something Anna thinks will take effect.
– These are good guidelines, so I hope you have the difference. Above all, I want everyone to have the chance to see a doctor. The cure should be the same for all patients with epilepsy, regardless of where you live or how you read it yourself.