Sharing the vision epilepsy: life’s turning point Gavin Dimitri
THE EPILEPSY REPORT OCTOBER 2008 7
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- Bu səhifədəki naviqasiya:
- Sudden Unexpected Death in Epilepsy: a global conversation.
- Epilepsy ACT
6 THE EPILEPSY REPORT OCTOBER 2008 7 THE EPILEPSY REPORT OCTOBER 2008 DC
We have also met other families who have lost someone through epilepsy. Their stories echo ours in terms of lack of awareness about epilepsy- related deaths. As a way of trying to go forwards after this tragedy in our family and in trying to help other families, we established a memorial trust fund in Matt’s name. It is a growth fund within Greater Good, The Capital Region Community Foundation. Each year the dividends are divided equally between the ACT Epilepsy Association and the Epilepsy Foundation of Victoria to assist with research. It is a small fund and it is our way of trying to do something. But it is a drop in the bucket – much more government and community funding is needed to address the impact of epilepsy on families and the community. Two years ago we had a fund raising gig at the ANU bar to add to the money in the memorial fund. A number of Matt’s friends are very gifted musicians. It was a fantastic night – it helped raise awareness of epilepsy amongst the young people there, it helped them do something practical as a way of dealing with their grief, and it did raise a lot of money. Next month is the 5 th anniversary of Matt’s death. Two days ago was his birthday –he would have been 31. My hope is you can take away from his story and from the other speakers, a resolve to do what ever you can to bring epilepsy out of the shadows to help all the people who are struggling with this condition. Epilepsy needs to have a profile like cancer, diabetes, asthma, and SIDS so that the wider community is less ignorant and fearful of it. Funding is also desperately needed for national coordinated research into the extent of the problem, diagnosis and treatment. More funding is also needed for practical support for people whose daily lives are severely impacted by this condition – transport, employment, finances, health services and emotional support. Matt’s story also touches on issues about the health of men and young people – how to encourage them to be better at monitoring and managing their health conditions and to be supported in this. Thank you very much for your time and for listening.
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in someone with epilepsy, who was otherwise well, and in whom no other cause of death can be found, despite thorough post mortem examination and blood tests. This does not include those who die in status epilepticus and those who die from a seizure-related accident. In general, the risk of SUDEP for an adult with epilepsy is low, at one in 3000 persons over a one-year period. For persons with poorly controlled seizures the risk is one in 100 persons over one year. In children, SUDEP is an even rarer occurrence with the risk as low as one to two in 10, 000 over one year.
To date we do not know what causes SUDEP. Current research leads to respiratory or cardiac dysfunction, but the cause of this dysfunction still eludes us and we cannot know who will be affected. However, over the years some possible risk factors have been suggested including: Young adulthood
Presence of Tonic clonic seizures Increased frequency of seizures Frequent changes of dose and type of anitepileptic medication (AED) Poor compliance with AEDs
Alcohol abuse
Certain epilepsy syndromes
Yet risk factors only tell part of the story. Sometimes individuals with infrequent seizures die, while others with more frequent and apparently more severe seizures do not. People with epilepsy can take a very positive approach to reducing risk by making seizure freedom a high priority. Good control of seizures is often achieved quite simply by taking the medication prescribed, at the correct dose on a regular basis. It is generally agreed that seizure frequency is the factor most strongly associated with an increased risk of SUDEP, and that the ‘unknown’ category of seizure frequency, that where seizure frequency is not known or disclosed, showed the strongest association with risk of SUDEP of all seizure-frequency groups. What is SUDEP? When talking to bereaved families, especially those whose children or siblings were living independently when they died from SUDEP, the question of increased seizure frequency is one they often can’t answer. They just don’t know. Young adults however, often have irregular lifestyles and overlook the need to keep to a routine with their medication. Sometimes they experience side effects with the medication and decide to stop taking it. In either case seizures may occur or increase, but they may choose to ignore this fearing that disclosure may affect their ability to retain a driving license, cause problems with their employer, or increase parental concern. They may feel an occasional seizure is not too serious and that they can manage this. However, allowing seizures to occur does put them at risk and it is incumbent on us all to communicate to our young adults the danger of hiding or ignoring seizures, stopping or irregularly taking medication, and that having ‘a life’ doesn’t have to mean an excessive lifestyle. They need encouragement to talk to a doctor with a listening ear, who can work with them to plan a treatment program which they accept, understand, and follow. Life is precious, and while the risk of SUDEP is low, all factors that may lead to injury or loss of life should be included in any risk management discussion. Informed decisions about treatment and lifestyle can only be made if all the information is provided and consequences discussed. Until research finds that elusive cause for SUDEP, we can’t prevent it from occurring, but we can try to minimize the risk by seeking prompt medical advice when a seizure occurs, taking the medication as prescribed, and being aware of lifestyle factors that can provoke seizures and ways these factors can be managed.
T he School of Clinical Medicine at The Australian National University in Canberra has highlighted epilepsy as one of a number of chronic diseases that deserve more attention in medical school curricula. There are relatively few people with epilepsy in hospital wards these days, which means that students may miss out on valuable opportunities to learn first hand about the disease and its impact on people’s lives. Whilst medical training placements have, in recent years, extended into GP’s surgeries and other community locations, the fact of the matter is that most clinical training still takes place in our busy hospitals. The vast majority of people with epilepsy are living independent lives well away from the acute care setting where clinical experiences and patients lives differ enormously from the community setting. Consequently, medical students may end up with a rather limited and distorted view of epilepsy as a clinical problem. The ANU medical degree is a four- year graduate program with around 90 students in each year group. Year 1 and 2 students spend one day each week learning the art and science of clinical medicine, including communication and interviewing techniques and physical Teaching medical students about epilepsy
examination skills. An important part of the curriculum involves the application of these techniques and skills to the care of people with chronic conditions such as epilepsy. The second semester program in Year 2 includes an ‘epilepsy day’ (usually in September) where, with the support of Epilepsy ACT, people from the Canberra region who are living with epilepsy volunteer to meet with small groups of students to talk about their conditions. These teaching sessions are held in the very new and modern School of Clinical Medicine at The Canberra Hospital. the opportunity to practice their interviewing skills and learn about epilepsy and its effect on people’s lives. People living with chronic conditions are often the best people to teach students in this sort of setting. Students also get feedback on their knowledge and skills from their colleagues and tutors, as well as from the volunteers themselves. Each session lasts 60-90 minutes. Volunteers are often pleasantly surprised by the experience of working with medical students. Volunteer Helen, 37, found the atmosphere welcoming and comfortable and was happy to Dr Ashley Watson ANU School of Clinical Medicine participate. “The students are so curious and ask any questions they can think of” she said, “they are quite surprised how symptoms vary and that the reality is often different from the text book”. Jacinta Cummins from Epilepsy ACT said “this innovative approach broadens the clinical experience of epilepsy for students and Epilepsy ACT is delighted to be of assistance with this program.” From the volunteers perspective, many learn new things about their conditions. Some see the experience as an opportunity to raise awareness of their conditions in the healthcare community. Some see the experience as an opportunity to ‘give something back’ after all the care they have received. Others just like spending time with enthusiastic young people. One thing is for certain: the students and staff of the School of Clinical Medicine greatly appreciate the participation and contributions of volunteers to the training of our future doctors.
Interested people should contact the ANU School of Clinical Medicine for further information by emailing irene.howgego@ anu.edu.au or call 02-62443630 or Epilepsy ACT on 02 6287 4555. Volunteer Helen, being interviewed by students under supervision.
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