Ben Munoz & Ben's Friends were featured in Forbes very recently! Thanks to the Members who talked to the author, Sarah McKinney.
"We're In This Together: Stories & Tips from Patients with Rare Diseases" can be found HERE.
Ehlers-Danlos Syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provides strength and elasticity to the underlying structures in your body.
Ehlers-Danlos Syndrome is caused by a defect in the synthesis of collagen, specifically mutations in the COL5A and COL3A genes. The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic.
Hi y'all, I had a few questions for everyone who has EDS type 3. My son was just diagnosed earlier this week as I'm waiting on my "official" diagnosis. I was wondering if some of my "symptoms" relate to the EDS and/or if anyone else has experienced this? In high school, I used to pass out when I would Stand up and start walking, lately I'm feeling the same light headers, my sight starts to dissapear and literally back out out, my he's feels tingly and does my body like I'm on the verge of…Read more…
Ben Munoz and Ben's Friends Patient Communities were featured in Forbes over the weekend! Thanks to the Members who talked to the author, Sarah McKinney. Hope you enjoy this article! http://www.forbes.com/sites/sarahmckinney/2014/03/01/this-29-year-o...Read more…
Let us remember our fellow EDS members, who came here for support, and gave support. Feel free to share their photos, stories, legacy and videos as we create memories of their life.Read more…
I'm so trapped... I think I'm going to do the steroid treatment again... but I'm sick with myself over that decision. Last time it worked for 3 weeks. The time before that, 4. It's getting more and more pointless and that stuff makes me so sick. But I have to do something. I can hardly move and the pain drives me to tears. I keep asking and no one has any answers or even suggestions anymore. I don't have any idea what's wrong with me. I can't even find something that matches when looking online…Read more…
We’re so proud to announce the release of the Ben’s Friends iPhone App!!!
Go to the App Store and download it now. To help others locate the app easier and enjoy online support, don't forget to give the app a 5-star rate review. Strong reviews like 5-star help bumps up Ben's Friends in the Apple's search result.
In the App, you can access all 35 support communities through the site and it’s perfect for staying in touch with your friends, info and support while on the go. In our beta tests, patient reported using it in doctor office waiting rooms and right after they were given a new diagnosis. The next feature in the App will be portable doctor reviews!
I have a friend who I believe has been diagnosed with Ehlers Danlos since about 2 years ago---though he states 6 or 7 (1st noticed when a series of shoulder surgeries would not take)....He has been declining over the last couple of years with…
You're not alone.
If your family has been affected by EDS, consider Ehlers-Danlos Syndrome Support Network your second home.
Read More from our First-Time-User Guide
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This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
Acute Disseminated Encephalomyelitis (ADEM)
Arteriovenous Malformation (AVM)
Atrial Septal Defect
Charcot Marie Tooth (CMT)
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Guillain-Barre Syndrome (GBS)
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Traumatic Brain Injury (TBI)
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases
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