Welcome Members

Welcome to Ehlers Danlos Syndrome Support Community!

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

Individuals with Ehlers-Danlos Syndrome (EDS) have a genetic defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in patients with EDS are the result of faulty or reduced amounts of collagen. Collagen is a protein, which acts as a “glue” in the body, adding strength and elasticity to connective tissue.

EDS is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms. Each type of EDS is defined as a distinct disorder that “runs true” in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS.

Visit your Community Here.

 

This site is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.

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How is Ben’s Friends Different from Social Media and Other Support Sites?

 

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

We’re interested in you as a person, and in your struggles as a rare disease patient.  But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe.  Your information is never shared, and your activity never tracked by adware.

When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live.  That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together..

Ben’s Friends: Safe and Supportive. 
And anonymous to keep it that way.

Why create an account?

Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:

Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.

Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.  

Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.

Click here to create an account and join. 

 

Latest Discussions

  • Heads Up! Happening Soon
    by BensFriends_Admin on June 20, 2022

    One day soon, you will point your browser (or your DiscourseHub mobile app) in the direction of https://ehlersdanlossyndromesupport.org/ and there you’ll be … in a completely different place! Well, not completely different: the page on which […]

  • Shop With AmazonSmile This Summer And Help Change Patients Lives
    by Bens_Friends on June 13, 2022

    Father’s Day. Graduations. All Summer Needs. Do some “feel-good” shopping and change a rare disease patient’s life today. Go to smile.amazon.com Click “Get started” Once signed in, you will be prompted to pick a charity- Ben’s Friends […]

  • About the Recommend a Doctor, Therapist (Positive only) category
    by BensFriends_Admin on June 13, 2022

    Do you want to recommend a doctor, therapist or clinic. Please share positive reviews only. 1 post - 1 participant Read full topic

  • Trying to get a diagnosis re EDS (or not)
    by flemingm on June 9, 2022

    I’ve had a lifetime of chronic pain and fatigue. One of my doctors recommended testing through ancestry.com. When I looked at the results, the test flagged two genes that point to EDS. I’m not savvy enough to know if that means I have EDS or not […]

  • New York area help
    by ModSupport on April 2, 2022

    I’m looking for some help for a friend of mine. She was diagnosed within the last two years, but clearly has been dealing with EDS for much longer. She is located in the suburbs of New York City. Here are some of her needs. She’s looking for a […]

  • A Word about Covid Vaccines
    by Bens_Friends on January 3, 2022

    "Whether or not you choose to get vaccinated is a personal choice. Somehow, someway choice has become a political statement. Ben’s Friends Communities are for peer to peer support, not politics. While Covid is a concern of our membership, we are […]

  • Fwd: Holiday Help and Best Wishes
    by Bens_Friends on December 24, 2021

    We know. It’s been another long, tiring, frustrating year. We hope you will have exactly the kind of holiday that you want and need. But we also know that the holiday season isn’t always the easiest time for our members. If you are feeling […]

  • Holiday Help and Best Wishes
    by Bens_Friends on December 24, 2021

    It’s been another long, tiring, frustrating year. And the holiday season isn’t always the easiest time for people. We hope you will have exactly the kind of holiday that you want and need. If you are feeling lonely, or you just need to touch […]

  • Check out the Ben's Friends Blog
    by Bens_Friends on November 30, 2021

    Be sure and check out our Blog for the latest on Ben’s friends patient communities and the Disease/Conditions that we provide patient support for: https://blog.bensfriends.org/ 1 post - 1 participant Read full topic

  • Giving Tuesday on Facebook: Part Deux
    by Bens_Friends on November 27, 2021

    On Tues November 30 Facebook is matching all donations up to 8 million dollars. Can you help us out? We know patients are stretched thin and we are NOT asking you to participate unless you are able. BUT it’s possible that people in your social […]