Virtual Support Group

Ehlers-Danlos Syndrome Support Group

A Community for Shared Experiences, Resources, and Support

Click here to join the Support Group for Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, and POTS

‍

About the Group

The EDS support group serves as a dedicated community for individuals affected by Ehlers-Danlos Syndrome, as well as those managing related neuroimmune conditions like Mast Cell Activation Syndrome (MCAS) and Postural Orthostatic Tachycardia Syndrome (POTS). The group is open to everyone, whether undiagnosed, newly diagnosed, or experienced in managing these conditions, providing a welcoming space for sharing resources, experiences, and encouragement.

Mission ‍

The group prioritizes shared understanding, advocacy, and encouragement, offering a positive environment where members can connect, share insights, and gain practical knowledge about living with EDS, MCAS, and POTS.

Who This Support Group Serves‍

The group welcomes individuals with the EDS Trifecta, along with their families and caregivers. It is a supportive space for those seeking information, guidance, and community while navigating these conditions.

‍

What the Group Offers

Peer Support‍

The Ehlers-Danlos support community encourages connection between members, providing a safe environment for sharing personal stories, discussing experiences, and offering mutual support.

Resources

‍Members have access to a range of resources, including articles, guidelines, and educational materials specifically tailored to Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, and POTS. These resources provide valuable insights and practical advice.

Events & Meetings‍

Occasional virtual support group events, including guest speaker sessions and online meetings, cover essential topics like managing EDS symptoms, recognizing MCAS triggers, and understanding POTS. These events give members the opportunity to learn from experts and connect with peers.

Community Guidelines‍

To ensure a safe, inclusive environment, the group has established guidelines for respectful and supportive engagement, fostering a positive experience for all members.

‍

Conditions Supported

Ehlers-Danlos Syndrome (EDS)‍

EDS is a genetic connective tissue disorder that causes joint hypermobility, chronic pain, and other systemic effects. Members can access insights into managing EDS, along with additional resources from The EDS Clinic.

Mast Cell Activation Syndrome (MCAS)‍

MCAS involves abnormal mast cell activation, which can lead to chronic allergic-type symptoms. The group offers MCAS-specific support and resources for symptom management and trigger identification.

Postural Orthostatic Tachycardia Syndrome (POTS)‍

POTS affects blood flow and autonomic function, causing issues such as dizziness, fatigue, and rapid heartbeat. This community provides POTS-focused resources and shared insights to support symptom management and quality of life improvements.

EDS Trifecta & EDS Pentad

The EDS Trifecta refers to the combination of Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS), while the EDS Pentad expands this grouping to include gastrointestinal dysmotility and neurological or musculoskeletal issues. The support group provides resources and shared insights on managing both the Trifecta and Pentad, helping members navigate the complexities of these interconnected conditions.

‍

How to Join

Interested individuals can join the group on Facebook to access the full range of community benefits. As a private Facebook group, members will only be admitted to the group after agreeing to follow the community guidelines. Only approved members can view posts, ensuring a supportive environment.

Click the link below to join the group: