Ms Olga Wehrly:

Anecdotally, I can give an example off the top of my head. Last week, I came across somebody in a parenting group who suspected she had EDS. She was presenting with many of the same symptoms. She was added to one of our EDS Facebook groups. She asked how she would go about getting a diagnosis. We said there is not really anybody she could go to and that she could try this or that. She is French. Within 24 hours she had contacted a doctor at home and had been referred for an EDS assessment in France. She had a plethora of appointments all lined up. She asked us whether she should go ahead and everyone in our community answered "Yes". We said it was like winning the golden ticket in Charlie and the Chocolate Factory. We just do not have it here.

With regard to the mobility grants, it is about issues such as personal care and assistance with bedding and stairs. It is not open any more. Many of these supports are very much geared towards people who own their own homes. This is a problem for many of us. I am a single parent and I do not have a partner to help financially. Those of us in private rental accommodation do not have an end point. We are stuck. We are in the private sector. We will never earn a huge amount because we are a little bit restricted. The retirement years look a little bleak at this point because there is no security. It is not about getting a handout and looking for money. It is about empowering us to be able to go out and build careers and lives for ourselves so we can provide for our families and have security.