The ignorance is still there.

10. Dec, 2017


Have spent a few hours with others giving information to a mum. She is getting harassed by others. Her children have #autism Why do others think it's right to persecute, bully or subject others with a disability/vulnerable #hatecrime
It's simply not on. This lady is at end of tether. I really hope she takes on board all the information and help given.
Different not Less. Don't judge and really don't be horrible to the less fortunate. If you can't be nice leave well alone...

It's the same with Epilepsy. 

The stigma.The ignorance to someone having a seizure. Not knowing how or what to do. The toxicity factors of the drugs for seizures. Complacency isn't acceptable still in the 21st century. Postcode lotteries for treatments are not acceptable. Multi disciplinary teams are needed for Neurosurgery. Neurological teams are needed with the expertise of Neurology and Epilepsy.

This make do attitude for medical management of Epilepsy just isn't on. So many cocktails of drugs are just being given especially to those with Refractory ( uncontrolled seizures ) Epilepsy. The follow up on Patients needs vast improvement. Controlled seizures in Patients are sometimes just discharged to their own General Practitioners. How can this be right or even advisable?

The Brain needs Specialists in the Neurological Field. ( You wouldnt get a Lawyer to read an X-Ray ) Paediatrics need Paediatric Services. Adults need to be seen more than once a year with Epilepsy and be seen by the correct people. Everything more or less is an annual appointment. 

We are still awaiting word back on several appointments. The promises are always made. Still awaiting the CPR Course! Still awaiting input from the Disability Social worker on transition to Adult Services. This will be summer 2018. Things were discussed March 2017. There's no movement as yet.

Autism -The Brain operates differently only.

Generic and Branded anti-epileptic drugs. Getting the same version of anti-epileptic drugs (AEDs) with each prescription may contribute to how well the drug works for that person. Switching to a different version of a drug could cause confusion, anxiety, side effects or a breakthrough seizure in some people.

Check your medications always. Different versions may determine the efficiency and efficacy the drugs control the seizures.

May I wish you all a safe and Happy Festive Season. Be as well as possible. Remember Epilepsy is only part of you and not all of you. Against the trials and tribulations Epilepsy brings, you are all Beautiful. Don't let anyone else steal your Sparkle. 

Julie x