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.
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
- Spotlight: Ben’s Friends former Intern, Dr. Melissa Jones, MDby BensFriends_Admin on March 30, 2023
Sascha Gallardo – June 15, 2020 The patients who visit our sites have tons of questions on their mind related to their symptoms, which clinic to visit, the medications they are taking, and the treatment procedures they will undergo. They want a […]
- Ben’s Friends inks partnership with ClozTalkby BensFriends_Admin on March 9, 2023
Sascha Gallardo – July 1, 2020 We’re excited to announce that Ben’s Friends has partnered with ClozTalk, a social impact company that helps charities raise people’s awareness of their mission. ClozTalk now designs apparel like t-shirts, […]
- Rare Disease Diagnosis: Difficulties and Advancementsby BensFriends_Admin on February 21, 2023
Sascha Gallardo – August 31, 2020 Delays in getting an accurate diagnosis for a rare disease is very common. Patients would visit a physician, present their symptoms, and then they would be told there is nothing wrong with them. They’d visit […]
- Global Genes’ Rare Daily website features Ben Munozby BensFriends_Admin on February 21, 2023
Sascha Gallardo – September 29, 2020 Ben’s Friends co-founder and chairman, Ben Munoz, was interviewed recently for the Rare Leader, a regular feature of the Global Genes’ Rare Daily website. In the Q&A piece, Ben shares how the […]
- Ben Munoz shares the story of Ben’s Friends in RARECastby BensFriends_Admin on February 20, 2023
Sascha Gallardo – October 6, 2020 Global Gene’s podcast interviewed Ben Munoz recently about his experience as a survivor of an arteriovenous malformation stroke, connecting with a fellow AVM survivor, and eventually co-founding Ben’s […]
- Some of Ben’s Friends secrets to maintaining healthy communitiesby BensFriends_Admin on February 20, 2023
Sascha Gallardo – October 26, 2020 Ben’s Friends has been successfully running online patient communities for thirteen years and it just continues to grow. We are home to the most active communities of AVM survivors, people living with […]
- What’s Your And? Podcast features Scott Ornby BensFriends_Admin on February 9, 2023
Sascha Gallardo – November 5, 2020 Ben’s Friends co-founder and board member Scott Orn was featured recently in John Garrett’s podcast. Titled What’s Your And?, the podcast focuses on the guests’ interests or what they love to do outside […]
- Benefits of Having a Rare Disease and Chronic Illness Support Groupby BensFriends_Admin on February 6, 2023
Sascha Gallardo – January 29, 2021 Having a rare or chronic illness can make a person feel isolated and lonely. They may have people who definitely care but they would constantly need to connect with someone who is going through the same things. […]
- Once Upon a Gene podcast Features Ben’s Friendsby BensFriends_Admin on January 31, 2023
Sascha Gallardo – February 22, 2021 Once Upon a Gene recently interviewed Ben Munoz about the story behind the founding of Ben’s Friends, what motivated him to embark on this journey of building online communities for rare diseases, and what […]
- Struggling with nutrition, not being listened toby Idontknoooow on January 28, 2023
Hi! So… I’m kinda lost with my situation right now. So we took blood tests a little while ago. They were okay, they took albunim levels and checked my hydration levels etc. Because the blood work was okay now after them no one is listening to […]
