Our Facebook Group is a place where you can ask any question you want, search the archives of those who have gone before you, where it is safe to vent your anger and frustration, share your grief and heartbreak, and celebrate the joys and successes that will also come along. You can do all of this in the context of a non-judgmental community that truly understands what you are experiencing. This group is screened for parents and caregivers only, there are not public members nor medical professionals.
Once you have joined and introduced yourself, come back here and work through the site. We will guide you through the information step by step. We know you are jumping into the deep end of the pool, and you may feel like you’re having to get a degree in neurology in the space of a few weeks.
This site will help you build the knowledge you need to understand the condition, gain confidence in working with medical professionals and understand the terminology that can be confusing. You will be able to do this while also having a group of people you can ask questions, get clarification, and find emotional support.
To sign up for the group you will need to have a Facebook account. Even if you don’t typically use Facebook, we suggest creating an account and joining the group. We have found this to be the best platform for hosting this kind of support group.
To Join, visit the Facebook group at https://www.facebook.com/groups/DooseSyndrome/
Click “Join” and answer the questions. We ask questions to ensure that only parents and caregivers enter this group. An administrator will approve your membership and you can begin communicating with other parents from all over the world.