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.
I hope all of you have a lovely holiday weekend and spend some quality time with family of friends. Happy Easter!Read more…
We are working with a non profit consulting firm called Bridgespan that helped us put this survey together to help us quantify the benefits of Ben's Friends. The hope is that we can use the data to make the communities better and to apply for grants so that we can serve more patients in disease communities that we do not currently serve. If you have a minute today, we invite you to take our short survey to help us prove that getting support in a community improves one's health and outlook.…Read more…
I have 4 "kids" (all grown, only 2 with any signs of EDS, or so I thought!). My two youngest,20 year old daughter is here in Wisconsin going to school a short distance away, And my 24 year old son both have signs of EDS. My oldest sons live in Wyoming and are married, one with with my biological granddaughter, the oldest has adopted his wife's daughter from a previous relationship. These two have very few signs or symptoms of EDS, thank goodness! Our family is extremely close, not a day goes by…Read more…
Hey there everyone. My name is Laura, and I've repeatedly come across reports of patients with Chiari who also have Ehlers-Danlos syndrome, and I've started to wonder if I could in fact have EDS as well. I've been struggling for the last year physically, and I've been through a gauntlet of tests and specialists and we still don't have a clear picture.I'm wondering because I have several symptoms of EDS, but not some of the more definitive ones. I don't notice velvety skin, haven't noticed slow…Read more…
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Just wanted to share this inspiring video.
Laugh often. Love a lot. Be strong. Never give up.…
Dear EDS Support Family and Friends,
March 2014 is an exciting month for Ben’s Friends, as everything seems to fall into place! But before we share the good news, we invite you to participate in a brief survey on the positive impact…
You're not alone.
If your family has been affected by EDS, consider Ehlers-Danlos Syndrome Support Network your second home.
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