How to Find EDS Support Groups

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Living with Ehlers-Danlos Syndromes (EDS) can be a challenging journey, marked by chronic pain, dislocations, fatigue, and a host of other systemic issues. While medical management is crucial, the emotional and practical support gleaned from connecting with others who share similar experiences is invaluable. EDS support groups offer a unique space for shared understanding, coping strategies, and a sense of community that can significantly improve quality of life. This guide provides a detailed roadmap on how to effectively locate and engage with these vital resources.

Unearthing EDS Support: Your Comprehensive Search Strategy

Finding the right EDS support group requires a multi-faceted approach. You’ll need to leverage online resources, connect with medical professionals, and explore community networks to discover the groups that best suit your needs.

1. Harnessing the Power of National and International EDS Organizations

The most reliable starting point for finding EDS support groups is through official, well-established organizations dedicated to Ehlers-Danlos Syndromes. These organizations often maintain comprehensive directories of both local and virtual support networks.

Actionable Steps:

  • The Ehlers-Danlos Society (EDS International): This is the paramount global organization for EDS and Hypermobility Spectrum Disorders (HSD).
    • Website Navigation: Visit their official website. Look for sections titled “Affiliates and Support Groups,” “Community Resources,” or “Online Communities.”

    • Directory Search: Many national EDS organizations provide a searchable directory on their website. Use filters for your country, state/province, or even city to narrow down local groups.

    • Example: On The Ehlers-Danlos Society website, navigate to “Affiliates and Support Groups.” You’ll find a directory where you can select your region. If you’re in the United States, you might then see a list of state-specific organizations or direct links to local groups like “805 Ehlers-Danlos & Related Conditions Support” in California.

    • Virtual Group Listings: Beyond local groups, they often host their own virtual support groups. Look for “Let’s Chat: Virtual Support Groups” sections, which might offer specific groups for teens, adults over 50, or even those with vascular EDS (vEDS).

    • Example: The Ehlers-Danlos Society offers “Let’s Chat: Virtual Support Groups” covering various demographics, such as a “Let’s Chat: Teens” group or a “Let’s Chat: vEDS” group. These are typically facilitated by staff and require registration.

  • National Organization for Rare Disorders (NORD): NORD is a leading independent advocacy organization for individuals with rare diseases. While not EDS-specific, they often list patient organizations that focus on various rare conditions, including EDS.

    • Patient Organization Directory: Search NORD’s website for their “Patient Organizations” directory. Type “Ehlers-Danlos Syndrome” into the search bar.

    • Example: Searching NORD’s directory for “Ehlers-Danlos Society” will provide contact information and a brief overview of the organization, which can then lead you to their specific support group resources.

  • Country-Specific EDS Associations: Many countries have their own dedicated EDS associations, such as Ehlers-Danlos Support UK (EDS UK) or the Hypermobility Syndromes Association (HMSA).

    • Direct Search: Use a search engine to find “[Your Country] Ehlers-Danlos Syndrome Association” or “[Your Country] Hypermobility Support.”

    • Website Exploration: Once on their website, look for sections like “Local Support Groups,” “Community,” or “Helpline.” These often list contact information for group leaders or provide direct links to online forums.

    • Example: If you’re in the UK, a search for “Ehlers-Danlos Support UK” will lead you to their website, where you can find a dedicated section for local support groups or even a free helpline number.

2. Navigating Online Communities and Social Media

The digital landscape offers a vast network of individuals living with EDS. Online communities and social media platforms are powerful tools for connecting with others, but it’s crucial to approach them with discernment to ensure you find safe and supportive spaces.

Actionable Steps:

  • Facebook Groups: Facebook hosts numerous EDS-specific support groups, both public and private.
    • Keywords for Search: Use precise keywords like “Ehlers-Danlos Syndrome Support Group,” “EDS Zebras,” “Hypermobility Spectrum Disorder Support,” or “EDS [Your City/Region]” in the Facebook search bar.

    • Filter by “Groups”: After your search, apply the “Groups” filter to see relevant communities.

    • Read Group Descriptions and Rules: Before joining, carefully read the group description, rules, and member count. Prioritize groups that emphasize peer support, mutual respect, and evidence-based information. Avoid groups that promote unproven treatments or have a hostile atmosphere.

    • Request to Join Private Groups: Many valuable EDS support groups are private to protect member privacy and ensure a safe environment. Be prepared to answer a few screening questions about your connection to EDS when requesting to join.

    • Example: Search for “EDS Zebras Support Group” on Facebook. You’ll likely find several options. Look for one with active discussions and clear rules against medical advice, focusing instead on shared experiences and emotional support. A group like “Ehlers-Danlos Support UK has a Facebook group, @EhlersDanlosUK as well as closed local and regional groups for support and specific closed groups for parents, men’s support and partners’ support,” indicates a well-organized approach.

  • Online Forums and Message Boards: Dedicated health forums and rare disease communities often have sections specifically for EDS.

    • Inspire.com: The Ehlers-Danlos Society partners with Inspire to host an online community. This is a moderated platform, making it a generally safe and reliable source of information and connection.

    • RareConnect.org: RareConnect is another platform that facilitates online communities for rare diseases, partnering with patient organizations.

    • Keyword Search (General Forums): For broader forums, use terms like “EDS forum,” “Ehlers-Danlos message board,” or “hypermobility forum” in a standard search engine.

    • Example: The Ehlers-Danlos Society’s website often directs users to their message board on Inspire.com, providing a direct link to a vetted online community.

  • Reddit: Reddit has subreddits dedicated to various health conditions, including EDS.

    • Subreddit Search: Search for r/ehlersdanlos or r/hypermobility.

    • Read Community Info and Rules: Each subreddit has its own rules and culture. Review these before posting to ensure it aligns with your needs.

    • Example: On Reddit, you can find active discussions and a sense of camaraderie within r/ehlersdanlos. Users frequently share experiences, ask for advice on daily living, and discuss symptoms.

3. Leveraging Healthcare Professionals and Local Resources

Your medical team can be a valuable conduit to support networks, and local community resources might offer unexpected avenues for connection.

Actionable Steps:

  • Ask Your Doctor or Specialist: Your rheumatologist, geneticist, physical therapist, or other specialists who treat your EDS may be aware of local support groups or patient networks.
    • Direct Inquiry: During appointments, specifically ask, “Are you aware of any local EDS support groups or patient communities that you could recommend?”

    • Referral to Patient Navigators: Some larger medical centers or university hospitals have patient navigators or social workers who specialize in connecting patients with resources. Ask if such a service is available.

    • Example: “My physical therapist mentioned a local ‘Hypermobility Heroes’ group that meets monthly at the community center. She gave me the contact information for the group leader.”

  • Hospital and Clinic Patient Services: Many hospitals and clinics offer patient education programs and support group listings.

    • Check Hospital Websites: Look for “Patient Resources,” “Support Groups,” or “Community Programs” sections on local hospital websites.

    • Inquire at Patient Information Desks: Visit the patient information desk at a local hospital or clinic and ask about support groups for chronic conditions or rare diseases.

    • Example: A large university hospital might have a bulletin board in their waiting area or a dedicated page on their website listing various support groups, including those for chronic pain or rare genetic disorders, which could encompass EDS.

  • Local Community Centers and Libraries: These public spaces sometimes host support group meetings or maintain community resource directories.

    • Community Boards: Check bulletin boards at community centers, libraries, or even local coffee shops.

    • Inquire at the Desk: Ask staff at community centers or libraries if they know of any local health support groups.

    • Example: The local community center might have a flyer for a “Chronic Pain Management Group” which, while not EDS-specific, could attract individuals with EDS and lead to connections.

  • University Medical Centers with Genetics Departments: These centers often have a deep understanding of rare genetic conditions like EDS and may be connected to local patient advocacy efforts.

    • Website Exploration: Check the websites of university medical centers in your region, specifically their genetics or rheumatology departments. Look for “Patient Resources” or “Community Outreach.”

    • Example: The genetics department at a prominent university medical center might have a list of local and regional EDS patient organizations they recommend to their newly diagnosed patients.

4. Considering Specific Subtypes and Related Conditions

EDS is a spectrum of disorders, and sometimes, support groups might focus on specific subtypes (e.g., Vascular EDS) or co-occurring conditions (e.g., Dysautonomia, MCAS, Chronic Pain). Broadening your search to include these can open up more avenues for support.

Actionable Steps:

  • Vascular EDS (VEDS) Specific Groups: If you have VEDS, look for groups tailored to this more severe subtype.
    • The VEDS Movement: This organization is specifically dedicated to Vascular Ehlers-Danlos Syndrome and offers its own virtual support groups.

    • Example: The VEDS Movement’s website clearly lists virtual support groups specifically for “VEDS Parents,” “VEDS Connect” (for adults with VEDS), and “Coping with Grief and Loss” related to VEDS.

  • Dysautonomia International and MCAS Patient Groups: Many individuals with EDS also experience Dysautonomia (POTS, orthostatic hypotension) or Mast Cell Activation Syndrome (MCAS). Support groups for these conditions often have members who also have EDS.

    • Search for Related Conditions: Use search terms like “POTS support group,” “Dysautonomia support,” or “MCAS patient group.”

    • Cross-Reference: When you find such groups, inquire if EDS is a common co-morbidity among their members.

    • Example: You might find a “Dysautonomia International: MA” group in Massachusetts that, while focused on POTS, has a significant number of members also managing EDS.

  • General Chronic Pain Support Groups: EDS often involves chronic pain. General chronic pain support groups can provide valuable coping mechanisms and a sense of shared struggle.

    • Organizations like the American Chronic Pain Association (ACPA): The ACPA has local support groups across the US.

    • Example: The “American Chronic Pain Association Support Group – Conway, AR” might be a viable option if no direct EDS group is available, offering a community of individuals who understand the challenges of chronic pain.

5. Starting Your Own Group: When No Local Options Exist

If, after an exhaustive search, you find no suitable local EDS support groups, consider taking the initiative to start one yourself. This can be a rewarding experience and fill a crucial need in your community.

Actionable Steps:

  • Gauge Local Interest:
    • Online Polls: Post inquiries in general local Facebook groups (e.g., “Community of [Your Town]”) asking if others with EDS are interested in a local support group.

    • Flyers: Put up flyers (with permission) at local medical offices, physical therapy clinics, or community centers.

    • Example: “I posted in my town’s Facebook group, ‘Anyone else in [Town Name] living with Ehlers-Danlos Syndrome interested in a casual meetup for support and shared experiences?’ and received five interested replies within a day.”

  • Contact EDS Organizations for Guidance:

    • Resources for Group Leaders: The Ehlers-Danlos Society and EDSAwareness.com (Chronic Pain Partners) offer resources, guides, and even free website pages to help individuals start and manage local EDS support groups.

    • Example: EDSAwareness.com explicitly states, “We help those with Ehlers-Danlos find or organize support groups in their local communities. Our free program provides each group with a listing on the Support Group Directory and Map, free webpages, coaching, and more.”

  • Choose a Meeting Format:

    • In-Person: If sufficient local interest exists, consider a comfortable, accessible location like a community center meeting room, a quiet cafe, or a library.

    • Virtual (Local Focus): Even if you start a local group, you can still meet virtually via platforms like Zoom or Google Meet, especially if members have mobility challenges. This allows for local connection without the burden of travel.

    • Hybrid: Offer both in-person and virtual options to maximize participation.

    • Example: “Our initial group of six decided to meet virtually once a month via Zoom for the first few sessions, as it was easier for everyone to attend from their homes. We plan to explore an in-person meetup quarterly.”

  • Set Clear Objectives and Guidelines:

    • Purpose: Decide if your group will focus on general support, specific topics (e.g., pain management, navigating healthcare), or social connection.

    • Rules: Establish basic rules for respectful communication, confidentiality, and avoiding medical advice.

    • Facilitation: Decide if one person will facilitate or if the role will rotate.

    • Example: “Our group agreed our main objective is peer support and sharing coping strategies. We established a ‘no medical advice, only shared experiences’ rule and decided to take turns facilitating each month’s discussion.”

Maximizing Your Support Group Experience

Finding a support group is the first step; engaging effectively is key to deriving maximum benefit.

1. Attending and Participating Effectively

  • Listen Actively: Pay attention to others’ stories and perspectives. You might hear strategies or insights that resonate with your own experiences.

  • Share Your Story (When Ready): You don’t have to share everything at once, but opening up gradually can foster deeper connections and allow others to relate to you.

  • Be Patient: It might take a few meetings to feel comfortable and determine if a group is the right fit.

  • Respect Confidentiality: What is shared in the group should stay in the group. This builds trust and encourages open communication.

  • Contribute Positively: Offer encouragement, share helpful tips that have worked for you (without giving medical advice), and validate others’ experiences.

2. Differentiating Between Support and Medical Advice

It’s crucial to understand that support groups are peer-led environments for sharing experiences and emotional support, not substitutes for professional medical advice.

  • Seek Professional Guidance: Always consult your healthcare providers for medical diagnoses, treatment plans, and specific health concerns.

  • Focus on Shared Experiences: In a support group, the value lies in discussing how you cope with symptoms, navigate the healthcare system, manage daily challenges, and maintain mental well-being.

  • Example: Instead of asking, “What medication should I take for my joint pain?” a more appropriate question in a support group would be, “Has anyone found specific non-pharmacological methods or lifestyle adjustments that help them manage chronic joint pain?”

3. Finding Your “Tribe”

Not every group will be the perfect fit, and that’s okay. The goal is to find a community where you feel understood, respected, and empowered.

  • Try Different Groups: If one group doesn’t feel right, don’t be discouraged. Explore other options, both local and virtual.

  • Consider Group Dynamics: Do you prefer a small, intimate group or a larger, more diverse community? Do you want a group focused on specific EDS challenges or a broader support network?

  • Trust Your Gut: If a group’s atmosphere feels unwelcoming or unhelpful, it’s perfectly fine to seek support elsewhere.

Conclusion

Finding an EDS support group is a proactive step toward managing the complexities of living with Ehlers-Danlos Syndromes. These communities provide a vital lifeline, offering a space where shared experiences transform isolation into connection, and where practical advice and emotional validation flourish. By diligently leveraging national organizations, online communities, and local healthcare networks, you can uncover the perfect support system tailored to your unique journey. Remember to approach your search strategically, engage authentically, and always prioritize your well-being in finding a community where you can thrive.