# Latest **URL:** https://forum.ehlersdanlossyndromesupport.org/latest.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… --- ## [Welcome to Discourse](https://forum.ehlersdanlossyndromesupport.org/t/welcome-to-discourse/8)
**Author:** [@system](https://forum.ehlersdanlossyndromesupport.org/u/system)\ **Replies:** 0\ **Last updated:** [April 19, 2016, 9:17pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/welcome-to-discourse/8 "2016-04-19T21:17:39Z")
The first paragraph of this pinned topic will be visible as a welcome message to all new visitors on your homepage. It's important! Edit this into a brief description of your community: Who is it for? What can they … --- ## [How to help massive bruising](https://forum.ehlersdanlossyndromesupport.org/t/how-to-help-massive-bruising/983)
**Author:** [@Suzanne](https://forum.ehlersdanlossyndromesupport.org/u/Suzanne)\ **Replies:** 1\ **Last updated:** [February 18, 2026, 1:56pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/how-to-help-massive-bruising/983 "2026-02-18T13:56:54Z")
I have massive bruising - it takes relatively nothing to cause one, although I fall regularly from lack of balance, and am kind of a klutz. I am double jointed in every joint in my body, and have been all my life. Any … --- ## [Hypermobility type problems](https://forum.ehlersdanlossyndromesupport.org/t/hypermobility-type-problems/109)
**Author:** [@ButYoureSoYoung](https://forum.ehlersdanlossyndromesupport.org/u/ButYoureSoYoung)\ **Replies:** 1\ **Last updated:** [February 13, 2026, 12:56am UTC](https://forum.ehlersdanlossyndromesupport.org/t/hypermobility-type-problems/109 "2026-02-13T00:56:54Z")
So I’m a little bit new here. A bit about me, my name is Magnus. My doctor’s are currently debating EDS-HT or JHS because my skin doesn’t stretch (but has the velvety softness) and we have no official family history to l… --- ## [New to the group, looking for support](https://forum.ehlersdanlossyndromesupport.org/t/new-to-the-group-looking-for-support/980)
**Author:** [@Van](https://forum.ehlersdanlossyndromesupport.org/u/Van)\ **Replies:** 0\ **Last updated:** [January 31, 2026, 8:15pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/new-to-the-group-looking-for-support/980 "2026-01-31T20:15:49Z")
Hi, I’m Vanessa and new to the community. I don’t have a diagnosis yet, but EDS and POTS run in my family and all my symptoms are starting to make sense now that EDS has been suggested. I started getting sick when I wa… --- ## [Today is Giving Tuesday. Here Are Two Easy Ways to Help Our Community](https://forum.ehlersdanlossyndromesupport.org/t/today-is-giving-tuesday-here-are-two-easy-ways-to-help-our-community/976)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [December 2, 2025, 3:23am UTC](https://forum.ehlersdanlossyndromesupport.org/t/today-is-giving-tuesday-here-are-two-easy-ways-to-help-our-community/976 "2025-12-02T03:23:12Z")
Hi everyone, Today is Giving Tuesday, a day when many people look for meaningful causes to support. If you would like to help our community today, here are two simple and meaningful options. 1) Share our campaign with … --- ## [Our Community Is Coming Together. Here Is How You Can Help](https://forum.ehlersdanlossyndromesupport.org/t/our-community-is-coming-together-here-is-how-you-can-help/971)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [November 25, 2025, 5:49pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/our-community-is-coming-together-here-is-how-you-can-help/971 "2025-11-25T17:49:12Z")
Hi everyone, As we approach the end of the year, our entire Ben’s Friends network is launching our annual community support campaign. Each forum plays an important role, so we wanted to share a few simple ways you can h… --- ## [Share your story](https://forum.ehlersdanlossyndromesupport.org/t/share-your-story/966)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 2\ **Last updated:** [October 31, 2025, 12:29pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/share-your-story/966 "2025-10-31T12:29:17Z")
We are looking for people to share their stories in a video format, it’s pretty straightforward and won’t take up a ton of your time. If you are interested in doing that, please reach out to me and we will get that proce… --- ## [Wound Care](https://forum.ehlersdanlossyndromesupport.org/t/wound-care/960)
**Author:** [@olusk](https://forum.ehlersdanlossyndromesupport.org/u/olusk)\ **Replies:** 1\ **Last updated:** [September 25, 2025, 12:55pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/wound-care/960 "2025-09-25T12:55:30Z")
Hello! I am both patient and provider for EDS folks, and I have a patient currently struggling with wound closure post-operatively and was wondering if anyone had any suggestions? They are currently using steri-strips. --- ## [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… --- ## [Medical ketamine](https://forum.ehlersdanlossyndromesupport.org/t/medical-ketamine/954)
**Author:** [@Lovelylisa](https://forum.ehlersdanlossyndromesupport.org/u/Lovelylisa)\ **Replies:** 1\ **Last updated:** [September 2, 2025, 1:05pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/medical-ketamine/954 "2025-09-02T13:05:29Z")
Has anyone on here, from the UK, been prescribed medical ketamine and now been advised by their pain clinic that it is going to be reduced and discontinued? --- ## [Last Chance to Support Ben’s Friends in 2024 - Every Donation Counts!](https://forum.ehlersdanlossyndromesupport.org/t/last-chance-to-support-ben-s-friends-in-2024-every-donation-counts/942)
**Author:** [@BensFriends\_Admin](https://forum.ehlersdanlossyndromesupport.org/u/BensFriends_Admin)\ **Replies:** 0\ **Last updated:** [December 30, 2024, 10:25pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/last-chance-to-support-ben-s-friends-in-2024-every-donation-counts/942 "2024-12-30T22:25:01Z")
As we count down the final hours of 2024, I want to personally thank the 100+ donors who have already contributed over $27,000 to our Friends Helping Friends campaign. Your generosity is nothing short of inspiring, and … --- ## [From Isolation to Connection: The Role of Community Support](https://forum.ehlersdanlossyndromesupport.org/t/from-isolation-to-connection-the-role-of-community-support/941)
**Author:** [@BensFriends\_Admin](https://forum.ehlersdanlossyndromesupport.org/u/BensFriends_Admin)\ **Replies:** 0\ **Last updated:** [December 19, 2024, 8:08pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/from-isolation-to-connection-the-role-of-community-support/941 "2024-12-19T20:08:57Z")
As we approach the end of our year-end campaign, I wanted to share a powerful reminder of the impact your support makes. A Message from the Heart: We’ve just received an incredibly moving video from Jaz, one of our com… --- ## [See How Ben's Friends Changes Lives + Double Your Impact](https://forum.ehlersdanlossyndromesupport.org/t/see-how-bens-friends-changes-lives-double-your-impact/940)
**Author:** [@BensFriends\_Admin](https://forum.ehlersdanlossyndromesupport.org/u/BensFriends_Admin)\ **Replies:** 0\ **Last updated:** [December 16, 2024, 8:49pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/see-how-bens-friends-changes-lives-double-your-impact/940 "2024-12-16T20:49:42Z")
Campaign Update: If you have already donated to the campaign, THANK YOU. We are well over $15,000 for the campaign and the Matching Gift Challenge is really heating up (over 20 donors have already had their donations ma… --- ## [Exciting Update: Double Your Impact for Rare Disease Support!](https://forum.ehlersdanlossyndromesupport.org/t/exciting-update-double-your-impact-for-rare-disease-support/939)
**Author:** [@BensFriends\_Admin](https://forum.ehlersdanlossyndromesupport.org/u/BensFriends_Admin)\ **Replies:** 0\ **Last updated:** [December 13, 2024, 12:35am UTC](https://forum.ehlersdanlossyndromesupport.org/t/exciting-update-double-your-impact-for-rare-disease-support/939 "2024-12-13T00:35:15Z")
I hope this message finds you well. As we approach the end of the year, I wanted to share an exciting update on our “Friends Helping Friends” campaign and a special opportunity to double your impact. Campaign Progress: … --- ## [This Giving Tuesday, Make Sure No One Faces Rare Disease Alone](https://forum.ehlersdanlossyndromesupport.org/t/this-giving-tuesday-make-sure-no-one-faces-rare-disease-alone/938)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [December 2, 2024, 11:57pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/this-giving-tuesday-make-sure-no-one-faces-rare-disease-alone/938 "2024-12-02T23:57:44Z")
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 i… --- ## [See How Our Community is Changing Lives](https://forum.ehlersdanlossyndromesupport.org/t/see-how-our-community-is-changing-lives/935)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [November 24, 2024, 1:19am UTC](https://forum.ehlersdanlossyndromesupport.org/t/see-how-our-community-is-changing-lives/935 "2024-11-24T01:19:12Z")
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 t… --- ## [Become a Champion for Our Rare Disease Community](https://forum.ehlersdanlossyndromesupport.org/t/become-a-champion-for-our-rare-disease-community/934)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [November 19, 2024, 3:03pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/become-a-champion-for-our-rare-disease-community/934 "2024-11-19T15:03:45Z")
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 mea… --- ## [Join Us in Strengthening Our Rare Disease Community](https://forum.ehlersdanlossyndromesupport.org/t/join-us-in-strengthening-our-rare-disease-community/933)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [November 15, 2024, 7:51pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/join-us-in-strengthening-our-rare-disease-community/933 "2024-11-15T19:51:20Z")
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 affect… --- ## [An Opportunity to Strengthen Our Rare Disease Community](https://forum.ehlersdanlossyndromesupport.org/t/an-opportunity-to-strengthen-our-rare-disease-community/932)
**Author:** [@BensFriends\_Admin](https://forum.ehlersdanlossyndromesupport.org/u/BensFriends_Admin)\ **Replies:** 0\ **Last updated:** [November 13, 2024, 6:49pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/an-opportunity-to-strengthen-our-rare-disease-community/932 "2024-11-13T18:49:51Z")
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 streng… --- ## [Looking Your Stories - How Has This Support Site Benefited You?](https://forum.ehlersdanlossyndromesupport.org/t/looking-your-stories-how-has-this-support-site-benefited-you/914)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [January 9, 2024, 2:02am UTC](https://forum.ehlersdanlossyndromesupport.org/t/looking-your-stories-how-has-this-support-site-benefited-you/914 "2024-01-09T02:02:46Z")
@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… --- ## [📢 Calling mothers of children with rare diseases of all ages](https://forum.ehlersdanlossyndromesupport.org/t/calling-mothers-of-children-with-rare-diseases-of-all-ages/907)
**Author:** [@ModSupport](https://forum.ehlersdanlossyndromesupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [August 12, 2023, 6:14pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/calling-mothers-of-children-with-rare-diseases-of-all-ages/907 "2023-08-12T18:14:45Z")
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 Please share the community with other families who are affected. 70% of ra… --- ## [7 Things to Look for When Choosing a Doctor](https://forum.ehlersdanlossyndromesupport.org/t/7-things-to-look-for-when-choosing-a-doctor/902)
**Author:** [@BensFriends\_Admin](https://forum.ehlersdanlossyndromesupport.org/u/BensFriends_Admin)\ **Replies:** 0\ **Last updated:** [May 18, 2023, 9:23pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/7-things-to-look-for-when-choosing-a-doctor/902 "2023-05-18T21:23:08Z")
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 eve… --- ## [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… --- ## [Spotlight on our Member: John aka Jokhere from Living with Polyneuropathy Community](https://forum.ehlersdanlossyndromesupport.org/t/spotlight-on-our-member-john-aka-jokhere-from-living-with-polyneuropathy-community/890)
**Author:** [@BensFriends\_Admin](https://forum.ehlersdanlossyndromesupport.org/u/BensFriends_Admin)\ **Replies:** 0\ **Last updated:** [April 26, 2023, 1:12am UTC](https://forum.ehlersdanlossyndromesupport.org/t/spotlight-on-our-member-john-aka-jokhere-from-living-with-polyneuropathy-community/890 "2023-04-26T01:12:47Z")
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 su… --- ## [Hanging Out is Helping Out: The Cycle of Helping Each Other at Ben’s Friends](https://forum.ehlersdanlossyndromesupport.org/t/hanging-out-is-helping-out-the-cycle-of-helping-each-other-at-ben-s-friends/887)
**Author:** [@BensFriends\_Admin](https://forum.ehlersdanlossyndromesupport.org/u/BensFriends_Admin)\ **Replies:** 0\ **Last updated:** [April 12, 2023, 12:21am UTC](https://forum.ehlersdanlossyndromesupport.org/t/hanging-out-is-helping-out-the-cycle-of-helping-each-other-at-ben-s-friends/887 "2023-04-12T00:21:08Z")
Clasina Field – May 21, 2020 Helping others is good for your body as well as your mind. That’s what the article The Science of Helping Out said, anyway. And when the scientists measured the various benefits, they concl… --- ## [Ben’s Friends Communities Can Help Advance Medical Treatments](https://forum.ehlersdanlossyndromesupport.org/t/ben-s-friends-communities-can-help-advance-medical-treatments/885)
**Author:** [@BensFriends\_Admin](https://forum.ehlersdanlossyndromesupport.org/u/BensFriends_Admin)\ **Replies:** 0\ **Last updated:** [April 6, 2023, 10:03pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/ben-s-friends-communities-can-help-advance-medical-treatments/885 "2023-04-06T22:03:20Z")
Sascha Gallardo – June 10, 2020 The anonymity of members in Ben’s Friends communities allows them to freely share their experiences, doubts and worries. They safely find comfort from fellow patients without revealing t… --- ## [Ben’s Friends Communities Provide Warmth and Friendship during COVID-19 Pandemic](https://forum.ehlersdanlossyndromesupport.org/t/ben-s-friends-communities-provide-warmth-and-friendship-during-covid-19-pandemic/884)
**Author:** [@BensFriends\_Admin](https://forum.ehlersdanlossyndromesupport.org/u/BensFriends_Admin)\ **Replies:** 0\ **Last updated:** [April 6, 2023, 12:05pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/ben-s-friends-communities-provide-warmth-and-friendship-during-covid-19-pandemic/884 "2023-04-06T12:05:10Z")
Sascha Gallardo – May 21, 2020 COVID-19 forced millions of people worldwide to stay at home. Governments imposed measures such as physical distancing, stay-at-home, and total lockdown to contain the disease as it sprea… --- ## [Spotlight on Our ModSupport Member: Sharon a.k.a Stoney](https://forum.ehlersdanlossyndromesupport.org/t/spotlight-on-our-modsupport-member-sharon-a-k-a-stoney/881)
**Author:** [@BensFriends\_Admin](https://forum.ehlersdanlossyndromesupport.org/u/BensFriends_Admin)\ **Replies:** 0\ **Last updated:** [April 4, 2023, 9:47pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/spotlight-on-our-modsupport-member-sharon-a-k-a-stoney/881 "2023-04-04T21:47:55Z")
Sascha Gallardo – June 4, 2020 Providing a safe and supportive community for patients is our top priority at Ben’s Friends. We want members to freely ask questions, share opinions, and express emotions without having t… --- ## [Spotlight: Ben’s Friends former Intern, Dr. Melissa Jones, MD](https://forum.ehlersdanlossyndromesupport.org/t/spotlight-ben-s-friends-former-intern-dr-melissa-jones-md/879)
**Author:** [@BensFriends\_Admin](https://forum.ehlersdanlossyndromesupport.org/u/BensFriends_Admin)\ **Replies:** 0\ **Last updated:** [March 30, 2023, 10:08pm UTC](https://forum.ehlersdanlossyndromesupport.org/t/spotlight-ben-s-friends-former-intern-dr-melissa-jones-md/879 "2023-03-30T22:08:52Z")
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… [Next page](https://forum.ehlersdanlossyndromesupport.org/latest.md?page=1)