We are sometimes asked if Hypersomnolence Australia has a support group.
The answer is no, unfortunately we do not have the resources to run a support group.
The Idiopathic Hypersomnia Australia Facebook group is a patient ran support and information sharing group specifically for people living in Australia who have been diagnosed with Idiopathic Hypersomnia. The group isn’t affiliated with Hypersomnolence Australia so if you have any questions please contact the group admins directly via Facebook.
While there can be some benefits in meeting people who experience the same medical condition as you, we do recommend caution when participating in online patient ran support groups for a few reasons. It is important to remember that no one really knows who is participating in online groups so the information shared may not be by someone who actually has the condition or disorder the support group represents. We are aware of a number of instances where people have joined various online hypersomnia groups with the intention of selling drugs to vulnerable people. You can read about rogue online drug suppliers here .
Also with regards to Idiopathic Hypersomnia, because it is very often confused with “unspecified hypersomnia” (particularly in the United States) and hypersomnia associated with a particular cause eg: sleep apnea, other medical conditions and medications, it is not uncommon to find that many of the group members do not actually have Idiopathic Hypersomnia. This causes obvious confusion as well as an environment where people with Idiopathic Hypersomnia don’t feel they relate. The admins of the Idiopathic Hypersomnia Australia Facebook do work hard to ensure that only those diagnosed with Idiopathic Hypersomnia join their group however it is important to remember that it is Facebook ie: they really have no way of knowing for sure.
Interested in meeting people face to face? We occasionally organise meetups in some major cities. If you're interested keep an eye on our social media for details or you can contact us to express your interest.