iiinova — where your digital self keeps evolving

OhTWIST @ohtwist.bsky.social · 19/08/2026

You can follow my photography account at @photograbee.bsky.social. I'm scrambling to get Woocommerce working presently so I can sell worldwide not just in the US.

000

OhTWIST @ohtwist.bsky.social · 19/08/2026

Hi all. Sorry I've sort of dropped off for a bit. I'm having to focus every bit on my budding photography business now to stay housed so I confess I'm a bit distracted. So sorry to hear we lost Dr Tennant recently too. Another mensch. 🥺✌️

120

Reposted by OhTWIST

SPROUT 🌱🫒 @sproutwiki.bsky.social · 21/10/2024

🌈🌤️ Lethabo #ocsky ! He/they • Autistic • H-EDS #disabledartist #eds

An image of a nonbinary black person standing 3 different times. He has short locs with rainbow beads, glasses, and some moles covering their face. They have yellow noise cancelling headphones, and a yellow star chew necklace. They have an off-white t-shirt with rainbow stripes across the breast part. He is wearing a light blue backpack with some charms hanging off the bottom. In the first image, he is wearing a neck brace and wrist brace, with KT tape for shoulder support. He has rainbow vertical striped high-waisted pants, and blue sneakers. The second image he has mustard yellow forearm crutches and does not have the braces on, instead have a compression glove and compression ankle brace. In the third image he has a rollator that is decorated with fake leaves. It is navy blue and black, with a red bag underneath. End text

321259

Reposted by OhTWIST

Chronic Illness Humor @chronicillness.bsky.social · 01/02/2025

My Angry Joints / Connective Tissue Disorder #eds #rheumatoidarthritis #mctd #lupus

My Angry Joints
We are short-staffed. Please be patient with the connective tissues who did show up. *eyeroll* nobody wants to work anymore.

521527

Reposted by OhTWIST

Chronic Illness Humor @chronicillness.bsky.social · 30/01/2025

Source: eds.hannahlouise on Insta Chronic Illness isn't easy #chronicillness #chronicillnessmemes #eds

Source: eds.hannahlouise on Insta

woman looking hopeful "so we've finally found what's wrong with you after all this time"

woman looking grossed out "you've got a chronic illness, we don't know why it occurs or how to treat it. You'll be in pain most of your life and suffer with other random symptoms, don't forget the fatigue that'll make you want to stay in bed forever but you'll be expected to carry on as normal"

1332860

Reposted by OhTWIST

Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 01/06/2026

Introducing Schroth Therapy: An Expert Q&A on Scoliosis Care in EDS with Dr. Campesi buff.ly/WKS62OG #EDS #HSD #zebras #Scoliosis #Physio #MedSky #MedEd

121

OhTWIST @ohtwist.bsky.social · 30/06/2026

It was an honor to know and work with John. RIP dear friend. You've blessed - and continue to bless - oodles of people around the world. This is a beautiful tribute by fellow EDSer @karinasturm.bsky.social.

011

Reposted by OhTWIST

Chise @sailorrooscout.bsky.social · 29/06/2026

GOOD NEWS! A personalized mRNA vaccine, known as mRNA-4157, has shown promise in keeping melanoma, a deadly skin cancer, from returning. FIVE years later, NEARLY 70% of people in the vaccine group are CANCER-FREE. The vaccine also cut a person’s risk of the cancer metastasizing by NEARLY 60%.

nbcnews.com

A personalized vaccine for melanoma cut the risk of cancer returning after five years

If the vaccine is effective in a late-stage trial, it would be “paradigm-shifting,” one expert said.

273135554478

Reposted by OhTWIST

Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 31/05/2026

Measuring the Unmeasured - What Two New Studies Say About the Head, Neck, and hEDS buff.ly/niK7jRw #EDS #hEDS #Zebras #CCI #Medicine #MedSky

A promotional graphic for EDS (Ehlers-Danlos Syndromes) awareness about head and neck research. The design has a teal background with white text and several images: an X-ray of a neck with orange measurement lines and arrows, a medical spine model being pointed at with a pen, and an illustration of a woman shrugging with palms up. Yellow question-mark icons appear on the left and right.

Text shown:
EDS
Awareness
Ehlers-Danlos Syndromes
Measuring the unmeasured...
What two new studies say about the head, neck and hEDS
Some results may be unexpected....
www.chronicpainpartners.com

052

Reposted by OhTWIST

Emily Johnson @emilyrj.bsky.social · 28/06/2026

John Ferman, who founded of @cppedsa.bsky.social in 2011, passed away November 2025 EDS patient and filmmaker @karinasturm.bsky.social made this documentary short to honor John’s legacy of advocacy (in honor of his first wife, who passed away due to #EDS complications): youtu.be/vLar9uhx0NE?...

youtu.be

Where People Understand (Full Film, HD)

YouTube video by Karina Sturm

152

Reposted by OhTWIST

Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 29/05/2026

We need your support to keep our media team going thank you! Can you help? www.chronicpainpartners.com/chronic-pain... #EDS #EDSAwareness #HSD #Zebras #Spoonies #NEISvoid #Support

051

Reposted by OhTWIST

LaffingKat @laffingkat.bsky.social · 18/06/2026

Tools and assistive devices to help people with disabilities that affect their hands! #Disability #Arthritis #EDS

1102

OhTWIST @ohtwist.bsky.social · 28/06/2026

Sorry I've been a bit absent. I'm battling a gnarly health issue while trying to attend summer craft markets with my photography. I'm struggling with both. But hopefully not too much longer on the first issue. Follow @photograbee.bsky.social for the latter.

120

Reposted by OhTWIST

Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 01/06/2026

May EDS myth-busting with Chronic Pain Partners - all may not be as it appears to the untrained eye: www.chronicpainpartners.com/beyond-the-m... #EDS #hEDS #HSD #Hypermobility #zebras #MedX #MedSky #NEISvoid

072

Reposted by OhTWIST

🌿Rowynn Ellis @rowynnellis.bsky.social · 30/05/2026

Recently I was diagnosed with Hypermobile EDS. I also struggle with acute tendonitis in my drawing hand and muscle pains. Any other artists out there have any tips and tricks on how to make the creative experience more comfortable and less hurty? 😅 #eds #hypermobileeds

8133

Reposted by OhTWIST

Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 03/04/2026

Remembering Beloved EDS Specialist Dr. Rodney Grahame (1932-2026) www.chronicpainpartners.com/remembering-... #EDS #EhlersDanlosSyndrome #hEDS #HSD #Zebras #Medicine #Doctors #NEISvoid

A memorial-style poster on a teal background with white text, two white doves holding olive branches, a crying zebra illustration, and a photo of two people standing together at an indoor event.

Text on the poster says:
EDS Awareness
Ehlers-Danlos Syndromes
Remembering EDS champion: Dr. Grahame
1932 - 2026
chronicpainpartners.com

In the photo, Dr. Grahame, an older light-skinned man with short gray hair and glasses is wearing a light beige jacket over a blue striped shirt. Next to him is Jan Groh, a light-skinned woman with short dark hair and glasses wearing a patterned dress and a scarf, with visible forearm supports/braces and a blue-handled mobility aid. Two small candle illustrations appear near the bottom corners.

061

OhTWIST @ohtwist.bsky.social · 13/05/2026

Yep. Good news: they're recombining hEDS and HSD again. Unclear what it will be called nor how dxed or classified. (Popping popcorn.) And they're finally admitting you CAN have an autoimmune disease or three alongside. Sigh. Finally. Pub date Dec 2 now.

150

Reposted by OhTWIST

⛧The Hallokweeny⛧ @kweenytodd.monsterden.xyz · 05/05/2026

Just found out that May is #EDSAwarenessMonth! I have #hEDS & was diagnosed in my late 20s, & have been fighting for my own advocacy. I tell my stories so someone else in similar shoes feels seen when they read them. That's how I started looking for answers. #EDS is the zebra with many stripes.

1172

Reposted by OhTWIST

Milena Makani | Contemporary Art @milenamakani.bsky.social · 06/05/2026

ART FUNDRAISER FOR MEDICAL RESEARCH Acquire a painting that speaks to you and fund science. 50% of all art sales are donated to The Ehlers-Danlos Society, advancing research into Ehlers-Danlos Syndromes. I live with hEDS. Access to research changed my life. #eds #abstractpainting #contemporaryart

1105

Reposted by OhTWIST

Whatkonnerth @whatkonnerth.bsky.social · 13/05/2026

"There's not a lot we can do for people like you." Like really? I'm unwell and you are a Dr. Bloody get some up to date information and help me. I'm actually paying you!

022

Reposted by OhTWIST

Mahonia Trails @mahoniatrails.bsky.social · 13/05/2026

"If you're not having subluxations and dislocations you're not hypermobile."

111

Reposted by OhTWIST

KnightHawk🦅 @knighthawk899.bsky.social · 13/05/2026

I've talked to some people in different organizations and when I tell them one of my main goals is to raise SSI to where I can survive people like scoff at me. "Well, that'll never happen!" I'm like well I love to hear your ideas about how I can actually survive on my own🤔

284

Reposted by OhTWIST

Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 12/05/2026

You doctor said what??~! 😄 Our doctors have all said some doozies over the years as we struggle to get diagnosed. Share your favs in the comments. (No MD names!) #EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #MCAS #POTS #Dysautonomia #zebras #NEISvoid

553

Reposted by OhTWIST

Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 30/04/2026

Horizontal Parenting: 5 Strategies I Used After Surgery as a Disabled Single Mom www.chronicpainpartners.com/horizontal-p... #EDS #hEDS #HSD #EhlersDanlosSyndrome #zebras #Parenting #Disability #POTS #MCAS #CCI

012

OhTWIST @ohtwist.bsky.social · 01/05/2026

Tomorrow! Don't miss! It's normally $14.99 to stream. 👀

011

OhTWIST @ohtwist.bsky.social · 30/04/2026

Dental Freezing (Numbing) Formula that works great for many patients with CTDs: 1/2 mepiva w/out epi, 1 art w/epi 1:100,000 “art” stands for “articaine”. #EDS #hypermobility #HSD #NEISvoid #Dentists #autistic #Dentistry

021

Reposted by OhTWIST

OhTWIST @ohtwist.bsky.social · 15/04/2026

Y'all! This is a great opp to watch for just $3 USD! It's normally $14.99 to stream (they need to recoup costs still). I saw it and it's very moving and powerful. I bawled! TW: Medical gaslighting, death #EDS #HSD #zebras

082

Reposted by OhTWIST

OhTWIST @ohtwist.bsky.social · 17/04/2026

Rewatch Day 1 of the UVA EDS Symposium from April 9th, 2026 here: www.youtube.com/live/NYfexNL... #EDS #hEDS #HSD #Zebras #MedEd #MedX #NEISvoid

001

Reposted by OhTWIST

OhTWIST @ohtwist.bsky.social · 18/04/2026

Rewatch Day 2 of the UVA EDS Symposium from April 10th, 2026 here: www.youtube.com/live/IGtre6u... #EDS #hEDS #HSD #Zebras #MedEd #MedX #NEISvoid

021

Reposted by OhTWIST

A Chronic Voice @achronicvoice.com · 23/04/2026

"living with #ChronicIllness..[is] a rollercoaster built by some1 who was clearly drunk on Red Bull & bad intentions. U buckle in. U scream..Sometimes u even laugh because what else can you do?": buff.ly/4rAoSaD via zebrasunderground #ChronicPain #spoonie #disabled #ChronicLife #EDS #diagnosis

buff.ly

Dx = Relief or Grief?

The Zebra’s Diagnosis (Dx) Response Dilemma Explained

052

OhTWIST @ohtwist.bsky.social · 21/04/2026

We were lucky to have fellow zebra @karinasturm.bsky.social at the helm of our media team the last seven years. She's one to follow, as an emerging filmmaker, journalist and disability advocate. Rock on, friend. We owe you! #EDS

021

OhTWIST @ohtwist.bsky.social · 21/04/2026

Peeling the Diagnostic Onion - is your doctor falling for too many red herrings and missing your #hypermobility? buff.ly/2QA8nRe #HSD #EDS #hEDS #EhlersDanlos #pain #MedEd #MedTwitter #Fibromyalgia #fibro #zebras #NEISvoid #autistic #ADHD

031

Reposted by OhTWIST

Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 20/04/2026

It will also be on Apple TV starting May 19th for the win! 🙌✌️

021