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r/ehlersdanlos

This is a support sub for those with Ehlers-Danlos syndrome (all types) and HSD—diagnosed or waiting to be diagnosed. This is a welcoming place for those affected (or those simply wanting to learn more) to ask questions, share successes and failures, feel less alone, and discuss everyday life. Before participating, please read our rules. This subreddit does not allow medical advice. Thank you!

r/ehlersdanlos Subreddit Stats & Analytics

r/ehlersdanlos is a Medical Advice subreddit in the World category with 120,558 members. Use this page to track r/ehlersdanlos stats, subscriber growth trends, daily and weekly analytics, and similar subreddits with related audiences.

Recent r/ehlersdanlos growth: +136 members today (+0.11%) and +608 members this week (+0.51%).

Browse more Medical Advice subredditsReddit topics and subreddit categories.

Similar subreddits to r/ehlersdanlos include r/eds, r/eczema, r/SyringomyeliaSupport, r/Hashimotos, r/Celiac.

r/ehlersdanlos Current Stats

Total Members
120,558

r/ehlersdanlos Growth Analytics

24 hours
Growth↗ +0.1%
Net+136
Daily Avg+136
7 days
Growth↗ +0.4%
Net+449
Daily Avg+64
30 days
Growth↗ +1.9%
Net+2,199
Daily Avg+73

Daily Growth Chart (30 days)

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r/ehlersdanlos Subreddit Rules

1

No Medical Advice

Asking “Do I have EDS?” (and similar posts) are not allowed.

Users can share lived experiences & general suggestions.

Direct medical advice—including diagnosing, prescribing medication or treatments—is prohibited. Recommendations & suggestions are allowed with mod discretion.

Posts seeking individualized medical advice will be removed (e.g. VUS, symptom lists, etc.). Pictures of symptoms, and sensitive or urgent matters will be removed.

Use the “No Advice, Please” flair to avoid advice.

Violation reason: No asking for or giving direct medical advice, no asking "Do I Have EDS?"
2

No Medical Misinformation, AI Content, or Unsupported Big Claims

Significant medical or scientific statements require reputable sources.

Misinformation includes—but is not limited to—hoaxes, conspiracy theories (e.g., about vaccines, etc.), pseudoscience, and snake oil treatments.

  • Do not post or recommend AI-generated text or images (e.g., ChatGPT), as AI content often contains misinformation. All contributions must be human-made.
  • Scientific literature should be peer reviewed. All non-peer reviewed sources require mod approval prior to posting.
3

No Pregnancy-Related Morality-Based Judgements or Unwanted Comments

The decision to have children is deeply personal, regardless of Ehlers-Danlos syndrome or any other medical condition. Discussions about pregnancy and related topics (including abortion) are allowed. However, debating the morality of having children with EDS or other conditions, or making moral judgments about people who have children with disabilities, is not permitted. Unwanted or unsolicited commentary on pregnancy or reproductive choices is also prohibited.

Violation reason: No discussions on the morality of having children
4

No Memes or Off-Topic Posts (exception on Saturday)

Memes and off-topic posts can only be posted on Saturdays. Posts on other days will be removed. Please use the assigned flair.

Violation reason: No memes or off-topic posts outside of dedicated days
5

No Gatekeeping

Gatekeeping, in reference to this sub, is defined as actively or passively dismissing and/or vocally doubting someone’s diagnosis, experiences or symptoms. This applies for speaking about one person or as a general comment talking about a group of people.

This also includes comparing the severity of symptoms or their impact on people's lives, as well as making assumptions on anybody else's conditions or disability.

6

No Party Tricks or Resetting Joints

Party tricks and joint resetting are not allowed. “Party tricks” are deliberately bending body parts in ways that people without hypermobility can’t. They can be harmful for those with HSD/EDS, which is why any form of party tricks (including pictures, stories, etc.) are not allowed on this sub. This also includes demonstrating, describing, or encouraging joint resetting/manipulation (e.g., popping joints back into place).

Violation reason: No pictures or discussion of party tricks or encouraging joint resetting/manipulation
7

No Polls, Surveys, Research, or Petitions

We do not, generally, allow submissions on polls, surveys, research projects, and/or petitions. If you want to post anything related, please contact the moderators first with a clear description of what you want to post and the purpose of it. We will get back to you regarding whether you can post it in the sub. We will only consider topics that directly relate to EDS. Other topics can be posted in r/disability_survey or r/SampleSize.

Violation reason: No Polls, Surveys, or Research
8

Be Kind to Each Other (including Brigading)

This sub is a supportive space—please be kind and considerate. The following are prohibited and may result in removal or a ban: name-calling, insults, personal attacks, trolling, harassment, ableism, sexism, racism, bigotry, islamophobia, anti-semitism, anti-LGBTQ+ sentiments, abuse of mods, belittling others, doxxing, threats, negatively comparing two illnesses, or violations of Reddit’s policies (including brigading). We prioritize member safety, and violations will be handled accordingly.

9

No Social Media, Fundraiser Links, or Self-Promotion

Self-promotion, fundraising, and reselling are not allowed. All outside social media links (Instagram, TikTok, Discord, blogs, etc.) with the exception of YouTube are not allowed. You may link to any SFW subreddit as long as it is on topic.

10

Summarize and Describe Your Links

All links (including videos) must:

  • Summarize the link
  • Explain why it is relevant to the EDS community, and
  • Start or contribute to the discussion

Posts without sufficient context will be removed. If a link references a scientific study or medical finding, the original peer-reviewed research should be linked whenever possible, rather than only news outlets, blogs, or secondary summaries. Posts relying only on secondary sources or misrepresenting results may be removed.

Violation reason: Summarize and Describe Your Links and Videos
11

Flairs and Trigger Warnings

Please use and respect tags and flairs. This sub is family friendly. Potentially triggering or NSFW content should be either spoilered and/or tagged NSFW, as appropriate. This includes potentially triggering topics like disordered eating, weight, sex, abuse, and medical trauma.

If you're not sure if something is triggering, please spoiler and flair your post to be safe.

We have a “No Advice, Please” flair. If you see this on a post, do not offer any advice.

Violation reason: Respect flairs & use trigger warnings. Spoiler triggering content. Use NSFW tag as appropriate.
12

Repetitive Topics

In an effort to reduce the amount of repetitive posts and frequently asked questions on the sub, we encourage you to use the search function at the top of our subreddit to read posts on this topic.

13

Moderator Discretion

Due to the fact that rules cannot cover every possible situation, the moderators of this sub retain the right to remove a post or comment, even if it technically complies with the rules. Common reasons for removal include: photos of minors, inappropriate solicitations, false professional claims, misinformation, off-topic content, repetitive topics, meetup requests, and violations of Reddit’s content policy.

Violation reason: Mod Discretion (Off Topic, Photos of Minors, False Professional Claims, Reddit Content Policy, etc.)

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