The more we learn about MAE, the less we fear it! This site is a good starting place to find out about diagnosis and treatment – we hope to empower parents to understand MAE and become the best possible advocates for their child to help fight the disorder.
Not all doctors, nor even neurologists, are familiar with MAE, so the more information we have about the syndrome, the more chance we have of finding a successful treatment. Be aware, however, that you may encounter some resistance to passing information on to specialists – they often see “a little knowledge is a dangerous thing” and may not be open to parents dabbling in their area of expertise.
We also need to help those around us – family, friends, teachers, specialists and carers – to become informed and understand this unique epilepsy syndrome, and our child's specific needs and requirements.
People may be nervous or anxious around us and/or our child, mainly because they are afraid of saying or doing the wrong thing. It may seem harsh, when we ourselves are trying to come to terms with the diagnosis, but we need to share our knowledge to help them come to terms with it too – to raise their awareness and understanding.
One of the most effective ways of educating people about MAE is to refer them to this website!