Meet Alex, a passionate Dysautonomia International volunteer and co-leader of the Dysautonomia International Australia Support Group.
Alex has a couple of motivations to be involved with Dysautonomia International. First and foremost are her kids. “I have twin 18 year-old daughters who have POTS. One first became unwell at 14, and the other at 15 years-old. They have two older brothers, one of whom is also currently being investigated for POTS. It makes sense for me to be informed, and also to be involved with an organization that drives research to improve diagnosis and treatment options.” says Alex. She also enjoys helping others who are going through what can be quite a confusing and even traumatic experience, to get accurately diagnosed and find proper treatment. Alex states “I’m really keen to be involved in raising awareness, providing advocacy, and in encouraging better education for health professionals.”
“Kate George is the other Australian group leader and I have loved collaborating with her to get this group off the ground! We have worked really well as a team and we’re enormously proud of the supportive and respectful community that has developed.” says Alex.
Alex helped organize the first support group meet up in Australia, which took place in Sydney. “It was all new and I was apprehensive as I had no idea whether anyone would turn up. I was blown away by the small group of amazing people who came together, people with dysautonomia and some loved ones, all grateful for the opportunity to talk with others who ‘got it’. It was a very special gathering which showed me the real value of a supportive community.”
Alex encourages others to “get involved, in whatever way you are able. This might be posting the occasional comment or question in an online support group, raising awareness with your friends and family, contributing to activities during Dysautonomia Awareness Month in October, supporting fundraising activities, or taking a more active role with Dysautonomia International. Every little bit counts – and together we can make a difference!”
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