Ehlers-Danlos Syndrome Support Resources
The Mighty’s Condition Guides combine the expertise of both the medical and patient community to help you and your loved ones on your health journeys. For the Ehlers-Danlos syndrome (EDS) guide, we interviewed three medical experts, read numerous studies and surveyed more than 750 people living with EDS. The guides are living documents and will be updated with new information as it becomes available.
How to Get Support for Living With Ehlers-Danlos Syndrome
To learn more about living with Ehlers-Danlos syndrome (EDS), post a Thought or ask a Question in The Mighty’s EDS community or check out organizations like the Ehlers-Danlos Society, the Zebra Network or Ehlers-Danlos Support UK to find out how others got an EDS diagnosis, treatments that helped, tips for living with an invisible disability, and to give and get support.
Join The Mighty’s Ehlers-Danlos Syndrome Community | National Organizations | International Organizations | Resources For Loved Ones
EDS Resources: Support for Living With Ehlers-Danlos Syndrome
If you’re living with Ehlers-Danlos syndrome (EDS), finding others who understands — medical professionals included — isn’t always easy. However, you’re not alone. If you need additional information, support, resources, doctors who specialize in EDS and ways to talk to others living with the condition, these EDS organizations and online groups are a great place to get started. They may also be helpful to share with your loved ones to help them to better understand EDS.
Join The Mighty’s Ehlers-Danlos Syndrome Community
The Mighty offers a one-of-a-kind community full of EDS perspectives through stories, the ability to connect and chat with others who have EDS and up-to-date information on the condition. Join The Mighty through the website, mobile app or The Mighty’s Ehlers-Danlos syndrome Facebook page. Plus, you can post your Thoughts and Questions on the website or app to get feedback and support from others anytime you need it.
Visit the Ehlers-Danlos page on The Mighty to find personal stories and posts from other people living with EDS. It’s a great place to learn more about the day-to-day life of having EDS from other who’ve ben there, find out what experiences others have had with diagnosis and treatment, and access a supportive community.
The Mighty’s dedicated Facebook page for those living with EDS shares many of the same amazing stories and resources you’ll find on The Mighty site. You’ll also gain open access to an engaged Facebook community of others living with Ehlers-Danlos.
These national organizations provide some of the most up-to-date information about EDS for medical professionals, patients and their loved ones in addition to links to other resources to support your day-to-day life with EDS. You can also find referrals to other useful organizations and services as well as patient support groups and hotlines.
Perhaps the leading national organization on all things EDS, the Ehlers-Danlos Society is a great place to start if you want even more in-depth information about living with the condition. They also provide a robust resources section, including a medical professional directory, email-based helpline, an e-magazine, a collection or research, an events database and much more.
EDS Today provides easy-to-navigate access to additional EDS information including myths, news and research. Be aware that the site still references the old subtype classification system and only recognizes six instead of the 13 EDS subtypes now recognized by the 2017 international classification guidelines.
If you want to find local, in-person support groups, EDS Awareness is the place to go. You can search for nationwide supports groups in your area. If you want to start your own, it has resources for that too. It also has great info on ergonomic products to make daily activities more comfortable, coping techniques, a guide for dealing with doctors and an entire section dedicated to EDS-related products.
EDSers United, based in New Jersey, focuses on both EDS and the wider world of “rare” diseases in general. It offers a detailed list of other rare disease organizations and resources for disability-related questions like tax services and how to get disability placards. Plus, if you want to know why the zebra is related to EDS and other rare diseases, EDSers United breaks it down for you.
The Zebra Network’s got your back thanks to their focus on advocacy, awareness and patient support. The organization was founded by a woman living with EDS, and you can join the Zebra Network member section for free. Once you sign up, you’ll have access to support from other patients, the option to have a peer mentor and other resources.
EDS information isn’t just U.S.-based! These organizations also provide great information and additional resources that are accessible if you live internationally. This includes in-person support, hotlines and other information.
Based in London, the Hypermobility Syndromes Association isn’t just for people living with hypermobile Ehlers-Danlos syndrome, but for a group of conditions that share connective tissue difference and joint hypermobility like Marfan syndrome. Resources include info and advice, events, a section for professionals and a helpline number you can call for assistance.
As its name suggests, Ehlers-Danlos Support UK provides a wealth of information for EDS patients across the pond, and really, to anyone with an internet connection. They cover helpful topics like EDS and pregnancy, employment advice and child safety for parents. You can reach specialized volunteer coordinators who assist male-identified and senior EDS patients as well as parents. They have local U.K.-based support groups and a helpline you can call for support.
Resources for Loved Ones
If someone you love has been diagnosed with EDS, it can be hard to know what to expect or even how to support them. In addition to getting up to date on the symptoms and treatment options for EDS, here are some resources geared just toward those supporting someone with EDS.
- 17 Things People With Ehlers-Danlos Syndrome Wish Others Would Stop Saying
- 5 Things I Need From You as Someone With Ehlers-Danlos Syndrome
- One Simple Act You Can Do to Help Me Manage Ehlers-Danlos Syndrome
- To the Friend or Family Member Who Doesn’t Understand My Illness
- The Message That Helped Me Find Help for My Son With Ehlers-Danlos Syndrome
- 14 Ridiculous Things People Have Said About Ehlers-Danlos Syndrome
- 17 Myths About Ehlers-Danlos Syndrome That Make It Even Harder to Live With
- To My Partner Who Has Watched My Health Decline
- Why Deciding Whether to Have Children Is Difficult as Someone With Ehlers-Danlos Syndrome
- How My Family Advocates for My Ehlers-Danlos Syndrome
- How My Husband Keeps Me Fighting Through Ehlers-Danlos Syndrome
- Caring For Someone With EDS/HSD | The Ehlers-Danlos Society