The Lethargy is awful. The seizures are awful. Epilepsy is so needing 'brought out of the dark ages' & into the 21st century. Neurological expertise cannot just be a postcode lottery. Definitive and quicker diagnosis is needed. Time is and could be of the essence in many circumstances.
http://www.epilepsy.com/article/2016/12/study-finds-infantile-spasms-misdiagnosis-and-treatment-delay-can-lead-intellectual , Autism, Death. Undervalued and Underpaid. Parent/Carers coping with the impossible. Yes, it's unconditional love. No, we shouldn't have to tear ourselves apart for another. respite, socialsupports and resources should be a readily available lifeline for all us Parent/ Carers. Orthopaedic Surgeon on Tuesday at our new 'state of the art hospital '. The Clinic was running 40 min late. It was 1hr 15mins. Lewis fell asleep. We managed only because of this - him sleeping. Our kids with difficulties cannot manage over run times like this! I got a sorry! Explained not acceptable. Consultation lucky if 10 mins. We never got home until after 6pm. Why is there no provision in mainstream hospitals for complex special needs kids &; adults. Disabled persons need much better longterm care. You see Epilepsy carries many other contraindications for some. It's not just a seizure and all is well. It's very much so a life changing scenario. Interventions need to be better and quicker. There are so many things that you have to do in a day, never mind a week. No two days the same. You're constantly on call. You're a mum, carer, nurse, cook. So many things are asked of you! Those whom still think k having a seizure, thrash about a bit. Take a pill and all is well. Think again! Educate oneself. It's very much so more than that. Some lose all bodily functions. Come round and don't know where they are? Could you imagine that. I have witnessed this hundreds of times with my Son. Couldn't every imagine what that feels like though. On the positive aspect. Epilepsy doesn't own you. It will try. It's only ever part of you. Never all of you.. Julie Clark.
I recently had a conversation with a Professional guy from India. His Employer's have told him to cure himself of Epilepsy. They have tried to sack him. Not paid him since February this year. He's angry and upset understandably.
There is no Cure for Epilepsy to date..
This is an appalling state of affairs. The ignorance and stigma should not be like this in the 21st century. He's shunned. Isolated and some think he's possessed. I really had so much empathy and somewhat angry, this poor man was suffering so badly. I just couldn't believe in this modern age what I was listening to.
He told me he wanted Sudep to take him ( sudden unexplained death of Epilepsy ) I could have cried for him. I emailed his Employer's and the Indian Prime Minister. Epilepsy is not recognised as a neurological condition. Serious awareness needs implemented in Countries where this negative attitude & misunderstandings are so wrong.
Epilepsy is not contagious and you cannot catch it from someone.
I need you all whom read my Blog to shout Epilepsy Awareness from the highest of high. Email MP''s. Email your government's. This needs realtime Global intervention.
Epilepsy needs a Cure.