# Welcome **URL:** https://forum.ehlersdanlossyndromesupport.org/c/welcome/9.md [Latest](https://forum.ehlersdanlossyndromesupport.org/latest.md) · [Categories](https://forum.ehlersdanlossyndromesupport.org/categories.md) · [Tags](https://forum.ehlersdanlossyndromesupport.org/tags.md) --- ## [Welcome To EhlersDanlosSyndromeSupport.org](https://forum.ehlersdanlossyndromesupport.org/t/welcome-to-ehlersdanlossyndromesupport-org/96)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 1\ **Last updated:** [October 5, 2016, 6:34pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/welcome-to-ehlersdanlossyndromesupport-org/96 "2016-10-05T18:34:22Z")
Were you a member of our old EhlersDanlosSupport.org site? Simply LOG IN with your old user name and click on "Forgot password". We will send you a link to claim your old profile. First time visitor? Please go to our M… --- ## [About the Welcome category](https://forum.ehlersdanlossyndromesupport.org/t/about-the-welcome-category/26)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [April 22, 2016, 5:35pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/about-the-welcome-category/26 "2016-04-22T17:35:05Z")
What is Ehlers-Danlos Syndrome? 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… --- ## [Trying to get a diagnosis re EDS (or not)](https://forum.ehlersdanlossyndromesupport.org/t/trying-to-get-a-diagnosis-re-eds-or-not/788)
**Author:** [@flemingm](https://forum.ehlersdanlossyndromesupport.org/u/flemingm)\ **Replies:** 5\ **Last updated:** [September 4, 2025, 4:15pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/trying-to-get-a-diagnosis-re-eds-or-not/788 "2025-09-04T16:15:00Z")
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 tha… --- ## [Let's welcome Delight!](https://forum.ehlersdanlossyndromesupport.org/t/lets-welcome-delight/895)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 1\ **Last updated:** [April 30, 2023, 3:20pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/lets-welcome-delight/895 "2023-04-30T15:20:34Z")
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 som… --- ## [Community Guidelines](https://forum.ehlersdanlossyndromesupport.org/t/community-guidelines/703)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [November 10, 2021, 9:21pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/community-guidelines/703 "2021-11-10T21:21:27Z")
This is a Civilized Place for Public Discussion Please treat this discussion forum with the same respect you would a public park. We, too, are a shared community resource — a place to share skills, knowledge and interest… --- ## [Privacy Policy](https://forum.ehlersdanlossyndromesupport.org/t/privacy-policy/6)
**Author:** [@system](https://forum.ehlersdanlossyndromesupport.org/u/system)\ **Replies:** 0\ **Last updated:** [April 19, 2016, 9:17pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/privacy-policy/6 "2016-04-19T21:17:38Z")
What information do we collect? We collect information from you when you register on our site and gather data when you participate in the forum by reading, writing, and evaluating the content shared here. You do not have… --- ## [Terms of Service](https://forum.ehlersdanlossyndromesupport.org/t/terms-of-service/4)
**Author:** [@system](https://forum.ehlersdanlossyndromesupport.org/u/system)\ **Replies:** 0\ **Last updated:** [April 19, 2016, 9:17pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/terms-of-service/4 "2016-04-19T21:17:37Z")
The following terms and conditions govern all use of the Ben’s Friends website and all content, services and products available at or through the website, including, but not limited to, Ben’s Friends Forum Software, Ben’… --- ## [How is Ben’s Friends Different from Social Media and Other Support Sites?](https://forum.ehlersdanlossyndromesupport.org/t/how-is-ben-s-friends-different-from-social-media-and-other-support-sites/702)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [November 10, 2021, 9:20pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/how-is-ben-s-friends-different-from-social-media-and-other-support-sites/702 "2021-11-10T21:20:40Z")
Many people wonder how a Ben’s Friends community is different from social media and other support sites. The Ben’s Friends community for this rare disease is interested in only one thing: you. You as a person, and in yo… --- ## [Newly diagnosed but lifetime of symptoms](https://forum.ehlersdanlossyndromesupport.org/t/newly-diagnosed-but-lifetime-of-symptoms/697)
**Author:** [@anharris](https://forum.ehlersdanlossyndromesupport.org/u/anharris)\ **Replies:** 0\ **Last updated:** [November 5, 2021, 2:12pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/newly-diagnosed-but-lifetime-of-symptoms/697 "2021-11-05T14:12:46Z")
Hey all! I just got diagnosed with EDS, type is still TBD pending insurance/bloodwork. My sibling has hEDS - they were diagnosed late last year. As children we were diagnosed with “unspecified connective tissue disorder”… --- ## [New User Guide](https://forum.ehlersdanlossyndromesupport.org/t/new-user-guide/587)
**Author:** [@Ben](https://forum.ehlersdanlossyndromesupport.org/u/Ben)\ **Replies:** 0\ **Last updated:** [October 6, 2020, 1:48pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/new-user-guide/587 "2020-10-06T13:48:18Z")
Are you a new user? Don’t worry we will guide you. How to Create An Account? Click the image to watch the video on creating a new account. How to Use this Site? --- ## [Creating a New Account](https://forum.ehlersdanlossyndromesupport.org/t/creating-a-new-account/361)
**Author:** [@Bens\_Friends](https://forum.ehlersdanlossyndromesupport.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [May 17, 2019, 3:16pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/creating-a-new-account/361 "2019-05-17T15:16:07Z")
--- ## [Overwhelmed and now time for a Wheeled mobility device](https://forum.ehlersdanlossyndromesupport.org/t/overwhelmed-and-now-time-for-a-wheeled-mobility-device/350)
**Author:** [@JelloWobbles](https://forum.ehlersdanlossyndromesupport.org/u/JelloWobbles)\ **Replies:** 1\ **Last updated:** [May 4, 2019, 1:33pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/overwhelmed-and-now-time-for-a-wheeled-mobility-device/350 "2019-05-04T13:33:38Z")
EDS is not new to me but my mobility has become a huge hindrance to getting about in my community. I have been struggling to walk and I have used a cane for the past 15 years but it is not safe for me anymore on the ba… --- ## [Where to begin...hi Type 3 here](https://forum.ehlersdanlossyndromesupport.org/t/where-to-begin-hi-type-3-here/275)
**Author:** [@TinaEllen](https://forum.ehlersdanlossyndromesupport.org/u/TinaEllen)\ **Replies:** 1\ **Last updated:** [October 15, 2018, 1:10pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/where-to-begin-hi-type-3-here/275 "2018-10-15T13:10:18Z")
Guess I’ll jump right into it. Had my 4th surgery two weeks ago - tennis elbow. THte brilliant surgeon who performed the surgery on both of my elbows inregards to recovery says, “if you do something and it hurts, don’t d… --- ## [Mom of 2 boys with EDS](https://forum.ehlersdanlossyndromesupport.org/t/mom-of-2-boys-with-eds/264)
**Author:** [@Eawicks](https://forum.ehlersdanlossyndromesupport.org/u/Eawicks)\ **Replies:** 2\ **Last updated:** [July 26, 2018, 4:00am UTC](https://forum.ehlersdanlossyndromesupport.org/t/mom-of-2-boys-with-eds/264 "2018-07-26T04:00:36Z")
My name is Liz and I have 2 boys with EDS. My oldest with EDS is 22 and he also has Osteo Genesis Imperfects, my youngest son with EDS is 17. We just moved to the San Antonio area on May 13th from Denver, Colorado. My o… --- ## [Flexifemale!](https://forum.ehlersdanlossyndromesupport.org/t/flexifemale/176)
**Author:** [@Helensylvia](https://forum.ehlersdanlossyndromesupport.org/u/Helensylvia)\ **Replies:** 2\ **Last updated:** [December 12, 2017, 2:36am UTC](https://forum.ehlersdanlossyndromesupport.org/t/flexifemale/176 "2017-12-12T02:36:40Z")
I have been called many things in my lfe, but a loose woman??? That in the literal term, I am not. But in the slightly bendy imagination of mine, I did always feel that I was loose limbed. It wasnt until last year th… --- ## [FAQ for Your Community](https://forum.ehlersdanlossyndromesupport.org/t/faq-for-your-community/130)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [January 7, 2017, 4:59pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/faq-for-your-community/130 "2017-01-07T16:59:02Z")
In this FAQ, you will find answers to the following questions: 1. How do I log in? 2. How do I create a new account and confirm my email? 3. What do the tabs on the main page mean? 4. How do I start a new discussion? … --- ## [Your Mods/Staff](https://forum.ehlersdanlossyndromesupport.org/t/your-mods-staff/103)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [September 7, 2016, 6:33pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/your-mods-staff/103 "2016-09-07T18:33:16Z")
To contact your community moderator, click on their name (or right-click to open a new tab): ModSupport Ben Click on the blue Message box Enter your discussion subject Enter your message Click blue Message button to … --- ## [New Member Introduction](https://forum.ehlersdanlossyndromesupport.org/t/new-member-introduction/69)
**Author:** [@WhiteKnight](https://forum.ehlersdanlossyndromesupport.org/u/WhiteKnight)\ **Replies:** 4\ **Last updated:** [September 3, 2016, 1:23am UTC](https://forum.ehlersdanlossyndromesupport.org/t/new-member-introduction/69 "2016-09-03T01:23:58Z")
My name is James. My fiancee soon to be wife has EDS and I am just reaching out for any type of support here. She can't hardly make it to the bathroom without falling anymore. She has three types of eds and they are all … --- ## [User Name Policy](https://forum.ehlersdanlossyndromesupport.org/t/user-name-policy/72)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [June 7, 2016, 5:43pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/user-name-policy/72 "2016-06-07T17:43:32Z")
To maintain your privacy in a google-y universe, please do not use your real-life name. Because we are a peer-to-peer support network, we ask that members not include honorifics, degrees or professional designations su… --- ## [Site Etiquette](https://forum.ehlersdanlossyndromesupport.org/t/site-etiquette/53)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [April 23, 2016, 3:13pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/site-etiquette/53 "2016-04-23T15:13:10Z")
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, and mutual support. Members come from many backgrounds. Some have a… --- ## [Types of EDS](https://forum.ehlersdanlossyndromesupport.org/t/types-of-eds/38)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [April 22, 2016, 6:31pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/types-of-eds/38 "2016-04-22T18:31:00Z")
Ehlers-Danlos syndrome (EDS) is a group of inherited connective tissue disorders, caused by various defects in the synthesis of collagen. EDS is known to affect men and women of all racial and ethnic backgrounds. There… --- ## [Preparing for an appointment with a new Doc](https://forum.ehlersdanlossyndromesupport.org/t/preparing-for-an-appointment-with-a-new-doc/37)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [April 22, 2016, 6:17pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/preparing-for-an-appointment-with-a-new-doc/37 "2016-04-22T18:17:20Z")
Finding a new doctor can be difficult, and very scary. Being prepared can make the whole experience much easier on you, and on the new doctor. Remember that the doctor works for YOU, and if you are uncomfortable, then yo… --- ## [Welcome to Ehlers-Danlos Syndrome Online Support Group   1](https://forum.ehlersdanlossyndromesupport.org/t/welcome-to-ehlers-danlos-syndrome-online-support-group-1/27)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [April 22, 2016, 5:44pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/welcome-to-ehlers-danlos-syndrome-online-support-group-1/27 "2016-04-22T17:44:21Z")
What is Ehlers-Danlos Syndrome Online Support Group Ehlers-Danlos Syndrome Online Support Group is a dedicated patient-to-patient support community for families affected by EDSs . Ehlers-Danlos Syndrome Online Su…