This is a question I’ve asked myself repeatedly during this year of blogging – what would improve quality of life for those with myasthenia (including myself)? Are there little things that would make life better or is it all medication-related?
Here are three things I think could help, but share your thoughts below:
1. Understanding employers, protection against discrimination in the workplace and flexible working – read more from my posts about work.
2. The name ‘myasthenia’ to be recognised more frequently -read more about from my posts on raising awareness.
3. If medical staff knew more about myasthenia or if there were more specialist nurses – most people you meet with MG will tell you they have had a mixed bag of luck with medical staff. While I know rare diseases like MG will never be given as much thought as other conditions, it would be fantastic if knowledge was better shared.