SCDS can be a challenging condition, both physically and emotionally. Luckily, there are online support groups that are one of the best resources for those recently diagnosed with SCDS. They are run by an incredible group of volunteers, of whom I am eternally grateful for.
Please note: the majority of the participants in the support groups are those that have been recently diagnosed with SCDS, or have recently had surgery.
It's important to remember that those that have had successful surgeries, or have learned to manage their symptoms, naturally tend to drop off from participating in the groups. It's important to keep this in mind when reading the support groups to prevent getting overwhelmed by the stories shared.
Superior Canal Dehiscence Syndrome Support
Science-focused support group.
Founder: Pamela Gilbert
SCDS Support Group
An emotional-focused support group.
Founder: Ann Ratcliffe
French Support Group:
SDCS Déhiscence du Canal semi-circulaire Et Syndrome de Minor.