LIVING WITH IDIOPATHIC HYPERSOMNIA COMMUNITY GROUP
Hypersomnolence Australia aims to reduce social isolation among individuals living with Idiopathic Hypersomnia (IH) by providing a safe and empowering forum where they can share their experiences of IH with people they can relate to.
Details of the community group
Living with IH (LWIH) community groups will be run virtually (via Google Meet). There will be from time to time in person meet ups. Information about these meetings will be posted on our social media and website blog.
Both the Neurological & Sleep Associations are "Australasian" therefore our group is open to people living in Australia and New Zealand.
The purpose of LWIH community is to provide an environment for people with IH. Therefore, only people with an Idiopathic Hypersomnia diagnosis are permitted to attend our meetings. Exceptions to this rule will be at the discretion of the group facilitators only.
If there is enough interest we will have special meetings that are aimed at parents of children (adults or minors) with IH so parents are encouraged to register their interest in our meetings. We will contact them when meetings relevant to them have been scheduled. If your child is over eighteen years of age their consent will be required prior to your attendance at LWIH meetings.
LWIH community groups will be run regularly:
3rd Monday every month
4pm - AWST
6pm* - AEST
8pm - NZ Time
*NSW & VIC add an hour during daylight savings.
Would you like to attend one of our group meetings?
Step one, read the group guidelines
Step two, fill in our attendee form
You will only need to read the group guidelines and fill in the attendee form once (prior to your first meeting). Once we have received your completed form you will receive invitations via email prior to each of our meetings. If you would like to attend the meeting please click YES in the RSVP. If you do not want to attend the meeting click 'no' or ignore the invitation. You can request to be removed from the invitation list at any time.
Please note: Attendee forms must be received at least 24hrs prior to your first meeting to ensure we have enough time to forward you an invitation.
If you have any questions about our meetings please email Michelle at email@example.com
To ensure the aims of our Living with Idiopathic Hypersomnia community group are met, Hypersomnolence Australia has developed guidelines to outline the purpose of the group and for attendance and participation. All attendees will be asked to read this document and then fill in our attendee form prior to attending their first meeting.
To avoid going over the same topic we have put together a list of frequently asked questions. Please go over this prior to attending your first meeting.
Don't live in Australia or NZ but would like to attend a community group meeting?
We do support other groups. For people in the USA please contact Megan and Jody at firstname.lastname@example.org, for people living in the EMEA region (Europe/UK, Middle East and Africa) please contact Matt Baker at email@example.com and for people living in Canada please contact Maryann, Rebecca, and Kristin at firstname.lastname@example.org. You can find information about times and dates of their meetings on the Idiopathic Hypersomnia Awareness Week Facebook page and other social media.
With regards to Facebook. We do not have a Facebook support group however we recommend the Idiopathic Hypersomnia Australia Facebook group. It is a support and information sharing group run by people with IH. It is 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 in Facebook groups we do recommend caution when participating in Facebook groups for a few reasons. It is important to remember that no one really knows who is participating in a Facebook group 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.