3/14 Edited to

... Read moreAs someone who has followed Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) developments closely, I find the upcoming changes extremely promising. The new global diagnostic criteria, to be published on December 1, 2026, aim to provide much clearer and more standardized diagnosis for all types of EDS and HSD, which is a huge step forward considering how complicated and varied presentations can be. In my experience, the biggest challenge for individuals suspected of having EDS or HSD has often been the inconsistency in diagnostic methods across regions and healthcare providers. This update, backed by international research, expert collaboration, and rigorous peer review, promises to unify clinical understanding worldwide. The fact that it will be published in the American Journal of Medical Genetics further ensures its accessibility and credibility. What excites me most is the second publication planned for March 2027, which will offer best-practice care guidance and management pathways. Effective management has always been as important as diagnosis, since living with EDS or HSD requires ongoing, personalized care. These new pathways will help clinicians deliver better support from diagnosis through lifelong care. For those affected by these conditions or involved in their care, the "Road to 2026" initiative highlights the crucial advancements toward improving lives globally. The integration of updated classification, diagnostic pathways, and management strategies should reduce confusion and improve patient outcomes significantly. If you or someone you know is navigating EDS or HSD, keeping abreast of these updates will be key in accessing accurate diagnoses and the best care options. The transparency and systematic approach behind these changes inspire hope that future treatments and support structures will be more effective and patient-centered.

Related posts

Replying to @ehlers.samlos thank you for asking, sorry it took so long!! Been very busy and wanted to be thorough. Sped up and edited for viewing pleasure 💜 #mcas #eds #systemicmastocytosis #d816v #ayvakit
Myrtt |  🦓 EDS MCAS POTS 🧠🩺

Myrtt | 🦓 EDS MCAS POTS 🧠🩺

1 like

So exciting!
Ricky just shared this picture showing my Hebrew 1 workbook and I’m not sure who is more excited?! Thank you Ricky for trusting in my resources and I can not wait to see your progress. You’re laying the foundation for reading and writing Hebrew, a precious gift. If you’re ready to join R
Hebrew by Inbal

Hebrew by Inbal

1 like

This is so cool!!! How exciting 🫶
I got invited!!! Can't wait to see what happens next! #lemon8creator #superexcited #lemon8creatorprogram
I have no filter

I have no filter

1 like

Amazon haul for bible study…. So exciting!!! 🩷🥰🌸
#biblestudysupplies #illustratingbible #thegoodandthebeautiful #biblestudy
QueenLeoLexi

QueenLeoLexi

12 likes

Giving first time facials are so exciting!
#skincare #estheticianlife #esthetician #facialtreatment #dermaplaning
Oasiah

Oasiah

2 likes

A day in the life of a disabled drag king
Last week, I had two back to back shows on Thursday and Friday. Here’s a sneak peek at how I prepare the day of a show! 1. Stretching/Pilates: I have EDS and POTS so it’s very important for me to stretch and prepare my body and mind for a performance. (Yoga is NOT RECOMMENDED for anyone with hype
Flame Foxxe•Disabled drag king

Flame Foxxe•Disabled drag king

9 likes

A medical room with a bed and a Siemens machine, viewed from a patient's perspective. Overlay text reads 'SIGNS OF EHLERS DANLOS IN CHILDHOOD', indicating the early manifestation of the syndrome.
Signs of Ehlers Danlos in Childhood
ehlers Danlos syndrome can start showing signs very young! #ehlersdanlossyndrome #chronicillness
koren brosnac

koren brosnac

14 likes

The Reality of Ehlers Danlos
Ehlers Danlos Syndrome is not just a “TikTok disease” that makes you “flexible.” #ehlersdanlos #ehlersdanlossyndrome #edsawarenessmonth
Unseen & Believed

Unseen & Believed

8 likes

So exciting!!
Are you going??
Mea Monique 💕

Mea Monique 💕

7 likes

A smiling woman in a red and white striped shirt stands in front of a waterfall and building. Text overlays state, 'I asked chat gpt what it's like living with Ehlers Danlos Syndrome And here's what it said->'.
White text on a black background describes living with Ehlers-Danlos Syndrome, likening the body to a marionette with loose joints, experiencing joint slips, unpredictable steps, and constant muscle aches.
White text on a black background discusses the daily pain of Ehlers-Danlos Syndrome, describing it as a constant hum of discomfort that can spike, and comparing it to multiple simultaneous aches.
Life with Ehlers-Danlos according to Chat gpt
Honestly it helped me being able to read it like this and have it put into words. Is it helpful for you too? #ehlersdanlos #ehlersdanlossyndrome #chronicillness #healthinfluencer #health #healthandwellness
Unseen & Believed

Unseen & Believed

33 likes

Ehlers-Danlos & Vascular Compressions
How does Ehlers-Danlos Syndrome cause vascular compressions? #raredisease #ehlersdanlos #vascularcompressions
Ashley Massey

Ashley Massey

1 like

Exciting news! 🎉
Hillsdale Shopping Center Wick2whispers candles now have a home at The Collective in Hillsdale Mall! 🏬✨ If you're wondering how to find us, I’ve got you covered—watch this quick walkthrough so you know exactly where to go. Stop by anytime starting February 1st to shop our handcrafted candles
Wick2Whispers

Wick2Whispers

0 likes

A person with short pink hair, wearing a coral dress, smiles by a lake, illustrating the title "symptoms I thought were normal but were actually ehlers danlos syndrome."
A person in a black sweater with colorful dinosaur patterns holds a drink in a dimly lit venue, illustrating the symptom "getting the hiccups ALL the time (painful ones)."
A person with dark hair, wearing a blue top, smiles while holding a drink with an orange rim, illustrating the symptom "shaky hands and twitchy eyes (eyeliner=impossible)."
Normal or a symptom of ehlers danlos syndrome?
Have you heard of ehlers danlos syndrome? 🧐 I was diagnosed a few years ago and was very lucky to get a doctor that specializes in chronic pain and illness. She prescribed me low dose naltrexone, which has really helped with alot of my symptoms! The most common symptoms I experience are:
Steph🐙

Steph🐙

332 likes

Image shows a stack of Freida McFadden books on the left and a shelf of new book releases on the right, including 'Not in Love' and 'King of Greed'. Text overlay reads 'BOOKS releasing TODAY 6/13/25'.
The book 'So Happy Together' by Olivia Worley, featuring candy hearts on the cover, is highlighted as a romantic suspense novel. Text expresses excitement for this new release, noting it's about jealousy.
The book 'Dear Future Me' by Deborah O'Connor, showing a house by the sea, is described as a dark academia-ish thriller/suspense. The plot involves classmates' letters to their future selves haunting them.
New Release Tuesday is back!!! so exciting!🤩
So many great new books coming out today! I’m most excited for So Happy Together and Sister, B, Sister! What about you?😋 #newbooks #newrelease #lemon8bookclub #bookaesthetic #reading *book cover pics are pulled from goodreads or amazon, I do not own them.
caralinemreads

caralinemreads

82 likes

SO EXCITING❤️
BIG things are coming y’all — like, I can barely keep it to myself!! I’ve been in full planning ✍🏽 + prayer mode 🙏🏽 behind the scenes, and let me just say… God is moving, and I’m moving right with Him✨ There’s so much I’ve been working on — things I’ve been dreaming about ✨, writing down in fai
Liv💋

Liv💋

12 likes

Exciting News! 🫶
My husband and I are thrilled to share we are expecting! After several years of stormy weather, a rainbow makes its way. Baby Courtney is due April 2025 and is so very loved! October is miscarriage and pregnancy loss awareness month. I have been anxious to share the news, but I know all of my b
Laura C

Laura C

4 likes

A smiling woman in a red and white striped shirt stands in front of a waterfall and a building. Overlay text states, "I asked chat gpt what it's like living with Ehlers Danlos Syndrome And here's what it said->".
White text on a black background describes living with Ehlers-Danlos Syndrome, likening the body to a marionette with stretched-out rubber bands, detailing joint instability, unpredictable steps, and constant muscle aches.
White text on a black background explains the daily pain of Ehlers-Danlos Syndrome as a constant hum of discomfort, sometimes severe, and describes experiencing multiple pains simultaneously.
Life with Ehlers-Danlos according to Chat gpt
Honestly it helped me being able to read it like this and have it put into words. Is it helpful for you too? #ehlersdanlos #ehlersdanlossyndrome #chronicillness #healthinfluencer #health #healthandwellness
Unseen & Believed

Unseen & Believed

4 likes

Wasn’t growing pains, it was Ehlers Danlos Syndrome
It wasn’t just growing pain and it was definitely not “nothing to worry about” It was a connective tissue disorder that effects the entire body! It wasn’t until I was several comorbid conditions in that I finally got my diagnosis. #EhlersDanlosSyndrome #EhlersDanlosAwareness #ConnectiveTissue
Lindsay Murray

Lindsay Murray

24 likes

A month-by-month pregnancy guide detailing common symptoms from weeks 1 to 40. It lists various physical changes and discomforts, with '28 weeks today so exciting!' highlighted in the Month 7 (weeks 25-28) section.
28 weeks today so exciting!
I'm officially 28 weeks!! how far along are you all? #pregnancy #momlife #momsoflemon8
Eisenschenk Ros

Eisenschenk Ros

25 likes

I have exciting news!
I just hired an illustrator to do my poetry book illustration. ANDDD Fatalities is getting character art and i’m screaming because it’s so good 😭😭 #poetryart #writepoetry #character #characterart #lemon8diarychallenge
rae mill ☀️ writes

rae mill ☀️ writes

5 likes

When taking a bath is so exciting! 🫶✨
#bathroom #housechicken #chicken #fun #crossbeakchicken
Beauty_withBrains81

Beauty_withBrains81

1 like

A person with hair in a bun takes a selfie outdoors near a body of water and bare trees, with text "RUNNER TIPS for my EDS zebras!" overlaid.
A scenic view of a lake and trees under a sunset sky, with text "1. Pick the Weather" and advice about avoiding extreme temperatures for running.
A shopping cart filled with groceries including fresh produce, dairy, eggs, and some packaged treats, illustrating the tip "2. You are what you eat."
RUNNING TIPS for Ehlers Danlos Syndrome!
DISCLAIMER: consult with your physician before running if you have EDS. It can be harmful for some! *Eat well I follow 90% nutrient-rich foods, 10% sweets diet. This helps keep me balanced but still enjoy a sweet treat every once in a while :) *Endurance Training It’s okay to start SLOW
Amanda Marie

Amanda Marie

39 likes

A young woman with long brown hair and glasses, wearing a black puffer jacket, smiles gently. She has a nose ring and is illuminated by sunlight, with a brick wall in the background. A Lemon8 watermark is visible in the bottom left corner.
🌟 Exciting news! I finally wrote a book! 📚✨ 

It’s been a journey filled with late nights and countless cups of coffee, but I can’t believe I’ve reached this milestone. Each page represents hard work, dedication, and so many small wins along the way. This accomplishment may seem small to some, but for me, it’s a huge step towards disciplin
Maria

Maria

2 likes

#fyp #impossiblethumbs #ehlersdanlos #chronicillne
Impossible Thumbs

Impossible Thumbs

6 likes

Ehlers Danlos
I have an appointment with a hypermobility PT tomorrow and wanted this photo handy, where my elbow, knee, and back are all bending in ways they shouldn't! #eds #ehlersdanlos #chronicillness #hypermobility
chaoticgreat

chaoticgreat

9 likes

Breakthrough in hypermobile Ehlers Danlos
Amazing new research! It’s not all in your head, part 2 coming tomorrow!
Dr Ahmed

Dr Ahmed

31 likes

See more