Ehlers-Danlos Syndrome Support is an online patient support community that is powered by BensFriends.org, a network of patient support communities for rare diseases. 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.
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.
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
- This Giving Tuesday, Make Sure No One Faces Rare Disease Aloneby ModSupport on December 2, 2024
As we approach the end of the year, I’m reaching out with an urgent request on behalf of thousands of patients with rare diseases and chronic illnesses who rely on Ben’s Friends for support and connection. Our mission is critical: to ensure that […]
- See How Our Community is Changing Livesby ModSupport on November 24, 2024
I hope this message finds you well. Today, I want to share a powerful story that illustrates how our Ben’s Friends community is making a real difference in people’s lives. This story highlights why your support, whether through fundraising or […]
- Become a Champion for Our Rare Disease Communityby ModSupport on November 19, 2024
Thank you for being an essential part of our Ben’s Friends community. Today, I want to invite you to take your support a step further by becoming a fundraiser for our “Friends Helping Friends” campaign. What does it mean to be a fundraiser? As […]
- Join Us in Strengthening Our Rare Disease Communityby ModSupport on November 15, 2024
I hope this message finds you well. As a valued member of our Ben’s Friends community, I’m reaching out to share an important initiative that directly impacts the support we provide to individuals like you who are affected by rare diseases. […]
- An Opportunity to Strengthen Our Rare Disease Communityby BensFriends_Admin on November 13, 2024
I hope this message finds you well. As a valued Ben’s Friends community member, I wanted to reach out about an important initiative. In the coming days, we’ll be launching a campaign that gives us all a chance to strengthen and grow our rare […]
- Looking Your Stories - How Has This Support Site Benefited You?by ModSupport on January 9, 2024
@trust_level_0 Dear Ehlers Danlos Syndrome Support Member, For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare […]
- 📢 Calling mothers of children with rare diseases of all agesby ModSupport on August 12, 2023
Ben’s Friends has launched a new community for moms raising children with rare diseases and chronic conditions and we are inviting you to join Warrior Moms Living with Rare Disease Warrior Moms Living with Rare […]
- 7 Things to Look for When Choosing a Doctorby BensFriends_Admin on May 18, 2023
Sascha Gallardo – November 1, 2022 When you are experiencing symptoms and know that something is wrong, do you settle with the first doctor you meet? Like many other patients, do you also think that doctors know everything so you should believe […]
- Let's welcome Delight!by ModSupport on April 30, 2023
Hi all! Please welcome @GDDelight to the forum. It sounds like she has a lifetime of experience to share with us here. It’s not uncommon for people to find Ben’s Friends during the early days of diagnosis, but having someone with experience is […]
- Spotlight on our Member: John aka Jokhere from Living with Polyneuropathy Communityby BensFriends_Admin on April 26, 2023
Sascha Gallardo – March 7, 2020 Polyneuropathy is often characterised by numbness, tingling sensation, burning pain and even paralysis of the hands and feet which can later on progress to the other parts of the body such as the arms and legs. This […]
