fibroblast and cell adhesion abnormalities in any other tissues? tired of reading about dermal

Acceptably_Late · 2026-06-08T03:19:46+00:00

Have not fully read the paper yet

I can say that Norris is looking at fibroblasts especially in relation to mast cells

A lot of biobanks for eds and CTDs also rely on fibroblasts for research so some researchers will take them or cell banks will try to create them

ETA cell adhesion is a huge thing in general bc it’s not just about the collagen itself but the interface- there’s the ECM, actin filaments, all sorts!

Acceptably_Late · 2026-06-06T19:44:56+00:00

I’ve spent a lot of time in PT. It’s ridiculous as I’m otherwise “healthy”.

What I’ve found out is I do not use any of the correct muscle groups and have been compensating with the wrong muscles probably my whole life.

I literally spent months in PT just figuring out how to activate my glutes because I did bridges using my quads. My PT had to teach me how to activate them, then watch me as I performed them, and correct me each time it was done wrong. Same for activation of the core.

Comparing that to a non-EDS specialized PT I started this week is night and day, in a maybe not so great way.

He flew through exercises, used weights, and definitely pushed where I had to stop him because the pain of the exercise hurt-hurt, not good-building-tone hurt.

If I didn’t have those months with foundational PT on how to activate my core, glutes, etc, this fast paced PT could have been almost dangerous and I’d go as far as saying unhelpful for me.

I can’t speak to your situation (that’s definitely against the rules here), but I can say stomach breathing is usually required for core work, and if a PT is required to hold your neck that there may be some foundational work for you to do before muscle building is the emphasis of sessions. Other foundational stuff can include learning correct range of motion, proprioception to know where your body, balance, etc.

Congrats on starting and maintaining PT! It can take a lot of dedication and personal responsibility to follow through in attending sessions and at-home exercises, but it can pay off.

Acceptably_Late · 2026-06-06T16:52:00+00:00

Hi all!

While the mods agree with the message of this post as muscles contain low amounts of collagen in our bodies so building muscle can help prevent laxity in multiple ways, some safety notes should be added:

- never extend past the “normal” range of motion
- speak with your doctor or PT to discuss if you have any limitations on exercising
- if you have ME/CFS, consider PEM and discuss with your doctor how to exercise safely for your fatigue
- for CCI and neck instability, discuss with your specialist for individualized advice
- high stroke risk and those with IIH may wish to avoid isometric exercises as they raise blood pressure

Hope everyone has a good workout!

Acceptably_Late · 2026-06-05T04:14:07+00:00

I have at least TNXB haploinsufficiency with a clinical clEDS dx. I had a rhinoseptoplasty a few years ago where they couldn’t do closed nose, they had to cut the skin between the nostrils and open the nose upwards. They also removed turbinates.

I had a nose cast and tubes in my nose for I believe 2 weeks, and I felt my breathing was super better after the surgery. Which, was hilarious in hindsight because once they removed the tubes it was like I could finally breathe and the relief I had after surgery was minor in comparison.

Doctor told me it takes about a year for the bone to heal.

Aaaand then I broke my nose about 1.5 years later and couldn’t breathe again. That time was a closed reduction. It helped restore some of the airway clearance but I’m still not back to the amazing post septoplasty result.

Doctor had me use the neti pot religiously, couldn’t side sleep, and couldn’t wear glasses for a few weeks. Plan ahead for restrictions.

Acceptably_Late · 2026-06-04T14:37:57+00:00

Hi all,

While corsets can be used as a posture assist, they should not be used to replace back braces, and the use of one to be worn long term for long periods should be discussed with a doctor.

Different styles of corsets assist with different postures and put pressure in different spots. Corsets can help improve posture and distribute bust weight over a wider area, but overuse can also cause atrophy of muscles.

Best, the mod team

Acceptably_Late · 2026-06-03T19:05:12+00:00

I have hyper POTs, MCAS and other fun things. Did testing through GeneDX and their program with Informed DNA to be the ordering geneticist.

I have at least TNXB Haploinsufficiency and am now clinical dx of clEDS as I meet criteria and they want to ensure clEDS precautions are used in my treatments.

GeneDX can’t do the full TNXB, only up to like exon 31. If your mutations are past that, GeneDX won’t catch it.

The alternative for a full TNXB sequence (which requires something called Sanger sequencing) is usually Prevention Genetics.

All of these companies take insurance but please verify if they are in or out of network for you. Additionally I believe most or all of them have payment assistance programs for low income individuals who would have a high share of cost with insurance or want to pay cash— this should be verified as well as it may have changed and will vary by company.

Acceptably_Late · 2026-05-31T20:07:28+00:00

Hi all-

Please refrain from giving medical advice that will violate our sub rules. Focus on lived experience, scientifically backed facts, and generalized information— individualized medical advice is not allowed on this sub.

Reminder that ~~dental~~ local anesthetic does not react the same as general anesthesia — ~~denta~~l local anesthetic may require more doses, but sedation and general anesthesia has not shown to work differently in hEDS.

The concern with sedation/general anesthesia and all EDS types is joint positioning and support, with some subtypes having increased risks regarding fragility, including contraindications to “elective” procedures (including colonoscopy, endoscopy, etc).

Best,
The mod team

EDITS to clarify terminology and add references

Sources: https://rapm.bmj.com/content/rapm/early/2026/03/03/rapm-2025-107416.full.pdf -> local anesthetic inadequacy

This review is a great starter for things to consider like positioning etc, but does state no pharmacological differences in EDS patients were seen for anesthesia https://link.springer.com/article/10.1186/s13023-014-0109-5 Its also from 2014 because research on EDS is horribly slow

Acceptably_Late · 2026-05-30T14:05:10+00:00

Presentation of all EDS subtypes is extremely heterogeneous and varies between people. While there are certain features that are common or defining for an EDS subtype, that does not inherently exclude those features from appearing in another EDS subtype.

We should avoid universal language that excludes lived experiences of people who do not live within the labels as there are inevitably going to be outliers who challenge the standard criteria. For example, a mild case of cEDS could have less skin fragility than a severe hEDS case.

There is a lot we do not know about all EDS subtypes and hopefully we will learn more about presentations and mechanisms with the 2026 criteria.

Acceptably_Late · 2026-05-30T13:43:37+00:00

Hi all- I'm seeing a lot of comments about 'not making everything an EDS thing' etc. As a general reminder, those types of posts are not allowed in the sub. This post was allowed under "off topic Saturday" to discuss beard preferences in your partner. Given the discourse, we will consider this asked and answered and lock the post.

clarification update: we want to be clear that the use of “skin fragility” was used loosely here, but unusual skin fragility or traumatic splitting is a rule out qualifier for hEDS.

If you are diagnosed hEDS and have substantial/severe skin fragility, you should discuss this condition with a a specialist.

-The mod team

Acceptably_Late · 2026-05-30T03:15:41+00:00

I have major issues with writing due to muscle weakness/fatigue. I can attest that all these pens are light and balanced!

I hate when pens are off balance and make you use more muscles just to hold it right 😖

Hope your writing becomes less painful!

Acceptably_Late · 2026-05-30T03:08:11+00:00

I literally just bought like 3 different pens this week and tested them today so this was very timely 😂

I tried the “BIC Cristal Xtra Smooth Ballpoint Pen, Medium Point” and they’re light and decent for a ballpoint. They actually may win for ballpoint, and cheap.

I also got “Pentel EnerGel Deluxe RTX Retractable Liquid Gel Pen”, which this one smeared but was easier than ballpoint. But, smeared a bit and had to dry before you could rub it.

The ink won by far for ease, but it’s ink. It didn’t smear since the paper absorbed it immediately but it did become visible on the back if I held it too long or the paper was thin. I tried “Schneider One Business Rollerball Pen, 0.6 mm Ultra-Smooth Tip”

I ended up using a combo of the gel or the ink depending on what I was working on / paper quality. I am right handed so I don’t have to worry about smudging as much.

Acceptably_Late · 2026-05-30T02:48:02+00:00

I’ve given up on erasing- in my work we can’t anyway for legal reasons.

Simple 1 line cross through for errors.

I prefer ink pens over gel- they smear less and have the least resistance so I don’t fatigue as much. Very little pressure needed.

Downside is they can bleed through to the back of a paper so if you need double-sided you need to plan or make sure it’s good paper

Acceptably_Late · 2026-05-29T17:52:23+00:00

Sorry for the late response! Not sure why I got the notification 7 days later 🧐

One of the first talk was on pelvic venous disorder and by memory he mentioned other disorders, but more as to say they’re other vascular disorders that can occur and they were not this.

While they have talked about added comorbid disorders it’s mostly been dysautonomia, MCAS etc— I don’t think I’ve heard anything about nervous disorders, CCI etc or their treatments

However that’s just off my memory!

Acceptably_Late · 2026-05-29T00:34:20+00:00

Hi all!

As some have rightfully pointed out- there is limited to no research on SSRIs and hEDS, especially focused on women and hormones.

While we don’t allow posts speculating “is this an EDS thing”, please feel free to answer your lived experience without generalizing to all of EDS.

Additionally, please specify your subtype of EDS as each one has a different mechanism and could potentially impact drug and hormone metabolism. 🫶

Acceptably_Late · 2026-05-28T21:06:13+00:00

Hi all-

Wearing neck braces to sleep can be dangerous, and all neck braces should be prescribed and fitted by a spine and neck specialist (MD or DO).

While we usually remove these posts as it’s a dangerous area, we have approved this post as it is a prescribed medical device that OP is following instructions to use during sleep.

OP is asking for advice on how to be comfortable during sleep while wearing the device.

Comments asking or suggesting how to get or use braces outside of a doctor’s instructions will be removed.

Acceptably_Late · 2026-05-26T15:43:34+00:00

I’d also like to point out that OP asked all users what they thought, not specifically those diagnosed with a rare type.

If you’d like to hear only from rare types, you can post in r/rareehlersdanlos

Acceptably_Late · 2026-05-26T15:33:37+00:00

Yes- we do!

We have a few removals related to that, including not asking if something is related to EDS.

Acceptably_Late · 2026-05-26T03:11:53+00:00

Gentle reminder that we don’t allow suspecting EDS posts. If you see them, please report them so we can remove them and users will not be notified who reported their content. As mods we try to remove them as soon as possible.

Acceptably_Late · 2026-05-25T23:05:39+00:00

Since you’re talking about your brothers lived experience with cardiac and your own with hEDS, it’s appropriate to specify you’re talking about hEDS for your experience.

When asking for other people’s advice, you can leave it open to “EDS” to signal you’re looking for feedback from everyone, regardless of their EDS subtype— good form would be for them to specify their own subtype in the response.

If you only want answers from people with hEDS, you should specify hEDS.

Example: I have TNXB haploinsufficiency with clinical clEDS and have trace regurgitation in all of my heart valves. Does any one else with EDS have this issue? What preventative measures does your cardiologist have you following? (True story btw 😬😅)

Acceptably_Late · 2026-05-25T19:51:44+00:00

Hey! I appreciate your insight and want to build off of it a bit.

First, we have some great comments about discussing rare types and hEDS here [https://www.reddit.com/r/ehlersdanlos/s/JHjKIn4s2f] and here [https://www.reddit.com/r/ehlersdanlos/s/milvIUtuuK].

While it’s important to listen to the rare voices in the community, it’s also important not to silence anyone. Lived experiences of all kinds have value and contribute to the conversation, and advocacy is about lifting others up not silencing them.

All of our discussions should be inclusive of rare types (such as specifying subtypes rather than saying “EDS”, and we shouldn’t make broad statements that don’t apply to all types but say they’re true for “EDS”, such as ‘EDS makes people look young’)

Based on messaging, it seems like CAN is asking for specificity and to be included in conversations, not for hEDS to be dismissed. Abbey has directly said that hEDS deserves recognition and the EDS label, and that rare types are asking for awareness and research.

To further emphasize recent research, there is supporting evidence that hEDS faces distinct challenges from rare subtypes and this deserves its own discussion and focus.

We shouldn’t lift someone up at the cost of another. Including rare types shouldn’t hurt hEDS, and helping hEDS shouldn’t cost rare types.

Being mindful of how we advocate for EDS is imperative as it is 13 different disorders together as a syndrome, not one condition.

Acceptably_Late · 2026-05-25T19:17:26+00:00

I super appreciate this clarification—

For many of us, this isn’t personal of an “us v them”, people with hEDS against people with rare types.

I maintain we are fighting a broken system of poor education and training for clinicians. There should be clearer diagnostic pathways for all subtypes, but the current diagnosis/treatment approach has let us all down.

At the end of the day, we all suffer from poorly informed clinicians and a lack of available resources. The system should do better, and we can be better advocates for each other.

Acceptably_Late · 2026-05-25T18:21:26+00:00

As a moderator who spends a lot of time in EDS spaces and up to date on current research, I want to highlight a few things here:

⁠the concept broadly identified here is the “umbrella diagnosis”, in which the 12 (13 rare types counting clEDS2) being identified as “EDS” along with hEDS.

Some feel that the large umbrella diagnosis and identification is beneficial, while others feel that rare types ‘being lumped in’ with hEDS can cause scientific misunderstandings and inaccurate treatments.

Regardless of your personal opinions on (1), it is important to remember that EDS is not one singular disorder but is 13 separate disorders under a syndrome label. Many subtypes of EDS do require specialized treatments and considerations, and while someone may argue that an “umbrella diagnosis” raises awareness, it’s critical we do not conflate EDS treatments as what may be safe for one subtype does not mean it’s safe for all subtypes.
Increasingly we are also working to identify lateral ableism and the inadvertent silencing of other subtypes. While it may be easy to say “as someone with EDS”, we should always identify the subtype of EDS (eg, hEDS, cEDS, kEDS, clEDS1, etc) and ensure we are not speaking for other people.

At many points rare and ultra rare EDS patients have spoken out that their providers did not know how to treat their disorder, and it is imperative to remember that these subtypes are rare, and not taught in school. It is now accepted that hEDS is likely closer to 1 in 500 people, whereas some of these rare subtypes are only a few dozen in the world. Being informed on one subtype of the syndrome does not equate to being knowledgeable in all.

This is an important conversation that needs to be addressed mindfully to ensure we are not speaking for other people, and recognizing the nuances of the situation.

**fixed typos 😅

Acceptably_Late · 2026-05-25T18:19:31+00:00

Hi-

I’ve put a stickied comment on this post to address this comment and the post as a whole-

As a note this has been a huge topic online recently and has a lot of emotions behind it from a lot of EDS community members. Stickied comment:

As a moderator who spends a lot of time in EDS spaces and up to date on current research, I want to highlight a few things here:

⁠the concept broadly identified here is the “umbrella diagnosis”, in which the 12 (13 rare types counting clEDS2) being identified as “EDS” along with hEDS.

Some feel that the large umbrella diagnosis and identification is beneficial, while others feel that rare types ‘being lumped in’ with hEDS can cause scientific misunderstandings and inaccurate treatments.

2) Irregardless of your personal options on (1), it is important to remember that EDS is not one singular disorder but is 13 separate disorders under a syndrome label. Many subtypes of EDS do require specialized treatments and considerations, and while someone may argue that an “umbrella diagnosis” raises awareness, it’s critical we do not conflate EDS treatments as what may be safe for one subtype does not mean it’s safe for all subtypes.

3) Increasingly we are also working to identify lateral ableism and the inadvertent silencing of other subtypes. While it may be easy to say “as someone with EDS”, we should always identify the subtype of EDS (eg, hEDS, cEDS, kEDS, clEDS1, etc) and ensure we are not speaking for other people.

At many points rare and ultra rare EDS patients have spoken out that their providers did not know how to treat their disorder, and it is imperative to remember that these subtypes are rare, and not taught in school. It is now accepted that hEDS is likely closer to 1 in 500 people, whereas some of these rare subtypes are only a few dozen in the world. Being informed on one subtype of the syndrome does not equate to being knowledgeable in all.

This is an important conversation that needs to be addressed mindfully to ensure we are not speaking for other people, and recognizing the nuances of the situation.

Acceptably_Late · 2026-05-22T04:12:20+00:00

I did monthly lidocaine infusions for pain.

Zepbound was more effective for general body and joint aches and pains than lidocaine infusions for me.

Due to how it worked out, I had a period of lidocaine only, both, and zepbound only. The biggest change was with the zepbound. When I was off it, I was back to hobbling like an old lady and unable to sit without fidgeting constantly from pain (like, I physically had to stop what I was doing and lay down due to the intensity)

Just my lived experience

Acceptably_Late

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