OhTWIST
@ohtwist.bsky.social
Oh That's Why I'm So Tired - Ehlers-Danlos syndromes blogger and medical educator, co-author EDS Toolkit for Doctors 2018, book on EDS and autism coming 2026 (tbd) (toes crossed) https://ohtwist.com
Source: eds.hannahlouise on Insta Chronic Illness isn't easy #chronicillness #chronicillnessmemes #eds
Yes, Chinese medicine can help with this. #BlogPost #ChronicIllness #ChronicPain #EDS #MCAS #POTS #HolisticHealth #Lipedema 💕 #Wellness
Lipedema: What It Is, What You Can Do About It
Do you have lumps and bumps or symmetrical pockets of fat on your legs? What about your arms, hips, abdomen, or buttocks?&nb…
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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
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.
Chronic Pain Partners - EDS Awareness@cppedsa.bsky.social · last mo.Where People Understand - short film by EDSer Karina Sturm in tribute to CPP founder and president John Ferman, d. Nov 11, 2025: youtu.be/vLar9uhx0NE?... #EDS #hEDS #HSD #EDSAwareness #CPP #Zebras #film
When it's so hot out your insides need special care. #BlogPost #GutHealth #Nutrition #Diet #Microbiome #EatWellLiveWell #HolisticHealth #SelfCare 💕 #Wellness
Hot Weather and Gut Health? Yes, Please!
If you’ve noticed that your digestive system reacts to hot weather you are not imagining things. It’s true. …
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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%.
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.
nbcnews.com
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?...
Where People Understand (Full Film, HD)
YouTube video by Karina Sturm
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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
Tools and assistive devices to help people with disabilities that affect their hands! #Disability #Arthritis #EDS
WhiskersAndThings@whiskersandthings.bsky.social · 2mo agoSo it turns out I forgot to include the video link! 😆
Where to begin when you are complicated? #BlogPost #EDS #hEDS #MCAS #POTS #HolisticHealth #SelfCare #Strategies 💕 #Wellness
How Chinese Medicine Treats hEDS (Where to Begin)
Acupuncture and other modalities of Chinese medicine can be an excellent resource for people with complex disorders, EDS and the c…
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What is between you and your ideal state of health? #ChronicPain #AcuteInjury #GutHealth #EDS #MCAS #CosmeticAcupuncture #Skincare #ScarRevision #MensHealth #PreventiveCare 💕 #Wellness
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.
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
Poor Halsey. MCAS is no fun and she's got other EDS and POTS too (not to mention an autoimmune condition). That's a lot. #MCAS #ChronicIllness #ChronicPain #EDS #hEDS #HolisticHealth #SelfCare 💕 #Wellness
Halsey Diagnosed with Mast Cell Activation Syndrome and a Host of Other Ailments. What is MCAS? - SnackSafely.com
Singer hospitalized for anaphylaxis numerous times.
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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
Remembering Beloved EDS Specialist Dr. Rodney Grahame (1932-2026) www.chronicpainpartners.com/remembering-... #EDS #EhlersDanlosSyndrome #hEDS #HSD #Zebras #Medicine #Doctors #NEISvoid
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.
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
POTS, Sjögren's syndrome, & MCAS... that's a lot. #ChronicIllness #ChronicPain #EDS #hEDS #MCAS #HealingPath #HolisticHealth 💕 #Wellness
Private star reveals health battle in most casual manner
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Yes, you can have both. #BlogPost #AutoimmuneDisease #ChronicIllness #ChronicPain #EDS #hEDS #MCAS #HolisticHealth #Acupuncture #TuiNa #LifestyleSupport 💕 #Wellness
Ehlers-Danlos Syndromes and Autoimmune Disease
Can you have EDS and an autoimmune disease? Both at the same time? Does a bear leave bowel movements in the woods? Yes. And yes, you most certainly can have EDS and an autoimmune di…
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"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!
"If you're not having subluxations and dislocations you're not hypermobile."
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🤔
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
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
