I used to be shocked learning of people around the world, who in 2018, believed that epilepsy could be caused by egg yolks1 or that having a spoon in one’s pocket could prevent seizures. Unfortunately, I continue to come across beliefs (plus superstitions) such as these. Although such beliefs are more prevalent in areas with low levels of literacy and education, I also come across them in what are supposedly developed nations.
I’m lucky to have been born in the UK: a society where science is part of our education from day one. Consequently, if I hear about what I may consider to be a suitable treatment for myself, I do my own research from credible, published scientific studies, and of course ask my incredibly qualified and experienced neurologist (I’ve researched them!) relevant questions.
Some cultures and societies do discourage people from questioning beliefs and medical professionals and this can be a barrier to learning the truth. Even if one does feel uncomfortable asking questions, the internet comes in very useful because we can research anything!
People don’t always like being challenged, but when it comes to epilepsy, we are talking about our lives. Believing that anyone can be cured through ceasing to eat eggs and then refusing medical treatment because they’ve stopped eating those eggs is not just illogical and unhelpful but very, very wrong: because the continuing seizures can lead to injury and SUDEP2.
None of us should believe something just for the sake of believing it. Does what you have been told make sense? If not, ask for an explanation in Layman’s terms3. Is the proposed treatment for your epilepsy based on scientific, published research from reliable sources4? Find a medically trained Neurologist, Epilepsy Nurse that you trust, who you feel respects you, and with whom you can have a great relationship (my incredible Neurologist and Neurosurgeon are from National Hospital for Neurology & Neurosurgery5, London)! I’ve spoken to many of them from around the world, and if you ask them a question about their work – gosh they’ll be happy to answer (you can ask the same question multiple times if you forget the answer too – I’ve done that!)! That’s why we have Neurologists blogging for us!! Check out some more of our blogs right here! epilepsysparks.com/blog6!
We patients need to recognise that those providing advice regarding epilepsy that involved eggs or spoons are not neurologists, neurosurgeons, nurses or neurophysiologists. These medical roles require:
Neurologists7 (medical degree plus 4/5 years' training (ongoing thereafter))
Neurosurgeons8 (medical degree plus 8 years' training (ongoing thereafter));
Epilepsy nurses9 (nursing degree plus 5 years’ experience in other nursing (ongoing thereafter))
Neurophysiologists10 (specialist degree (ongoing training thereafter))
It makes sense to trust professionally trained and experienced medical professionals over local myths. Your medical professionals won’t (or at least shouldn’t!) mind if you ask for more information regarding your brain or evidence regarding treatments. Ask them about treating epilepsy using spoons or removing eggs from your diet if you like! If you have a good neurological team they will want and encourage you to learn more about your own condition! Education is empowering and leads those with epilepsy to have healthier, happier lives.
If it's you that has epilepsy, a loved one, a friend, an employee - or whatever(!), you are amazing because you are here, open to education. There are too many sources of incorrect information out there (those being mainly people!) but together we can help change the general misunderstandings and suppositions in society regarding epilepsy, and consequently the discrimination affecting so many.
If you aren't sure where to start, consider checking out:
1. Epilepsy Sparks Blog: https://www.epilepsysparks.com/Generating-His-Own-High
2. SUDEP Action: https://sudep.org/
3. Layman’s terms: https://www.urbandictionary.com/define.php?term=layman%27s%20terms
4. Epilepsy Research: https://www.epilepsysociety.org.uk/epilepsy-research#.XAbbT2j7TIU
5. National Hospital for Neurology & Neurosurgery: https://www.uclh.nhs.uk/OurServices/OurHospitals/NHNN
6. Epilepsy Sparks blog: https://www.epilepsysparks.com/blog
7. Neurologist study and training: https://www.prospects.ac.uk/job-profiles/neurologist
8. Neurosurgeon study and training: https://www.sbns.org.uk/index.php/education-and-training/how-to-become-a-neurosurgeon/
9. Epilepsy Nurse study and training: https://www.epilepsy.org.uk/sites/epilepsy/files/professionals/competency_frameworks/ESN_Adult_Competency_Framework.pdf
10. Neurophysiologist study: https://www.healthcareers.nhs.uk/explore-roles/healthcare-science/roles-healthcare-science/physiological-sciences/neurophysiology/training-development-and-registration-neurophysiology
Torrie, I am wondering if when going to EP Action asking for a speaker to possibly give a talk and have a display stand at my work, could we request it to be you?. As I am from the WestLondon branch EA as well and know you from there, have read many of your blogs and did try liasing before but you were out of the country. Kind regards