Recognize any of the following?

#ChronicPain #AcuteInjury #GutHealth #EDS #MCAS #CosmeticAcupuncture #Skincare #ScarRevision #MensHealth #PreventiveCare 💕 #Wellness

Seit ich in der Traumaklinik bin, übertrage ich meine Notizen vom Aufenthalt 2024 in mein Kliniktagebuch. Spannend, was ich vor zwei Jahren schon bearbeitet und was für Fortschritte ich gemacht habe. Schade, dass sich das oft durch die somatischen Erkrankungen nicht so anfühlt.

#MECFS #MCAS #kPTBS

What are you looking to change when it comes to your healing journey?

#ChronicPain #AcuteInjury #GutHealth #EDS #MCAS #CosmeticAcupuncture #Skincare #ScarRevision #MensHealth #PreventiveCare 💕 #Wellness

#MCAS ist halt auch der Bonus neben #POTS zu #MECFS

#FirstDoNoHarm #ChronicAllies #CdnEd #PANS #PANDAS #MCAS #Neurodiversity #EducationCanada #InclusiveEducation #SchoolSupport #TeacherPD #TeacherTips

Ehlers Danlos Syndrome and Men: Three Key Issues Men and their experiences living with hypermobile Ehlers Danlos syndrome is a whole topic…one that doesn’t get nearly enough attention in my opinion.  When you look online for info…

Yes, guys have EDS too.

#BlogPost #MensHealth #GuysWithEDS #ChronicPain #ChronicIllness #EDS #hEDS #MCAS #POTS #HolisticHealth 💕 #Wellness

Another day of no sleep.

I honestly wonder how much longer my body will be able to hold on after years of this.

#longcovid #mecfs #pots #mcas

Three boxes of medications arranged on a light patterned surface. At the top is a white box labeled “Brilique 90 mg (ticagrelor)” by AstraZeneca. In the middle is a white and blue box labeled “Apixaban 5 mg film-coated tablets” by Sandoz. At the bottom is a yellow box labeled “Aspirin 75 mg gastro-resistant tablets” containing 28 tablets. The medications are stacked vertically and appear unopened.

Goodbye clopi, hello Ticagrelor.

Hoping for benefits,minimal side effects & nothing scary! 🙏

#LongCovid #POTS #MCAS #Migraine #TeamClots

Three boxes of medications arranged on a light patterned surface. At the top is a white box labeled “Brilique 90 mg (ticagrelor)” by AstraZeneca. In the middle is a white and blue box labeled “Apixaban 5 mg film-coated tablets” by Sandoz. At the bottom is a yellow box labeled “Aspirin 75 mg gastro-resistant tablets” containing 28 tablets. The medications are stacked vertically and appear unopened.

Goodbye clopi, hello Ticagrelor.

Hoping for benefits,minimal side effects & nothing scary! 🙏

#LongCovid #POTS #MCAS #Migraine #TeamClots

I feel a tad called out!!!

#ChronicIllness #SpéirGorm #SpéirGhorm #SpeirGorm #BrainFog #EDS #Pots #MCAS #Illness #Disability #Ireland #ChronicIllnessHumour

#MastCells #MastCellActivationSyndrome #MastCellActivation #MCAS #MCAD #HaT #Mastocytosis #MastCellActivationDisorder #MastCellDisorder #Neuroimmune #NeuroimmuneAxis #Histamine #Gastrointestinal #GastrointestinalHealth #GutBrain #GutBrainAxis

Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome One-fifth of Covid-19 patients suffer a severe course of Covid-19 infection; however, the specific causes remain unclear. Mast cells (MCs) are activat…

New in 2020 via Afrin, Weinstock and Molderings: Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome - implications for treatment if true
buff.ly/39RyJK1
#MCAS #MCAD #EDS #MedTwitter #COVID19 #MECFS #NEISvoid #LongCOVID

A promotional graphic for “EDS Unplugged” with bold text, photos of three women, and a large gold number 3. The main headline at the top reads: “EDS, MEDICAL RESEARCH & NEURODIVERGENCE”. A large gold “3” appears on the right side. The words “EDS UNPLUGGED” are in the center-left, with “EDS” in large black letters and “UNPLUGGED” in white letters on a black slanted rectangle. The name “JAN GROH” appears near the bottom in large pink letters. The phrase “sponsored by” appears near the center-right, next to a circular logo that reads: “EDS Awareness” and “Ehlers-Danlos Syndromes”. On the left is a woman with medium-to-dark skin tone wearing a black sleeveless outfit, holding a megaphone to her mouth. Near the middle is another woman with dark skin tone wearing black, arms raised, holding a forearm crutch. On the lower right is a close-up portrait of Jan, a light-skinned person with short curly brown hair and large glasses, wearing a patterned jacket over a dark top.

EDS Unplugged Podcast Episode 3: Neurodivergence with Jan Groh, author of the OhTWIST blog and co-author of the EDS Toolkit for Doctors

buff.ly/9sZKVdD

#EDS #hypermobility #hEDS #HSD #NEISvoid #Zebras #Spoonies #Autism #ADHD #AuDHD #POTS #MCAS #MedEd #MedSky

Y’all know that mast cells are immune cells?

And mast cell disorders like #MCAS #Mastocytosis (via Long Covid, other chronic infections and immune events, EDS etc) are *immune cell disorders*

“Covid doesn’t cause immune damage” people, we can’t spell it out more easily for you

It is a treasure trove of info but it is going to take me 1000 years to finish Disjointed. #hEDS #MCAS #Disautonomia etc

After I get IV saline I get a primal hunger that I don’t normally have.

Like that true, pure really hungry feeling that I haven’t got since getting sick.

Its great. It only lasts about an hour, but I’ll take what I can get.

#longcovid #mecfs #pots #mcas

I ate 6 red seedless grapes today…w only mild discomfort. First time in nearly a decade that I’ve been able to enjoy the sweet little taste bombs due to a complex chronic immune disorder. #MCAS #MastCellDisease #HαΤ (hereditary alpha tryptasemia)

Not really. #MCAS It’s a bigger issue than you’d imagine.

DAS! Rote Sofa: Leben mit ME/CFS: Wunsch nach mehr Hilfe und Sichtbarkeit - hier anschauen In Deutschland sind etwa 650.000 Menschen von ME/CFS betroffen – einer komplexen neuroimmunologischen Erkrankung, die zu schwerer körperlicher Einschränkung führen kann. Die Krankheit existiert bereit...

DAS! Rote Sofa: Leben mit ME/CFS: Wunsch nach mehr Hilfe und Sichtbarkeit - www.ardmediathek.de/video/Y3JpZD...

#MECFS #MCAS #LongCovid

#MCAS #POTS #Mito people: my body keeps rejecting sources of (dairy-free lactose-free gluten-free) protein and calcium as so many of them have histamine, and in general my body just doesn’t like metabolizing some things

Give me your best high absorption options, please thank you

Intuitive Eating vs. Mindful Eating–Which Is Better For You? (Some Tips For Folks With EDS, MCAS, &/or POTS) Have you ever thought about the difference between mindful eating and intuitive eating?  They are not the same thing, but both can be helpful approaches to nutrition when a person lives with E…

Which speaks more to you, intuitive or mindful eating?

#BlogPost #GutHealth #Intuitive #Mindful #ChineseMedicine #ChronicIllness #ChronicPain #EDS #hEDS #MCAS #HolisticHealth #SelfCare 💕 #Wellness

#MCAS is flared, so I'm on a wild, miserable ride. Spring has sprung. #Spoonie

Missed our prior newsletters? You can catch up on all of them here in our archives, any time you like:

buff.ly/SOlLwKE

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Zebras #NEISvoid #Doctors #MedEd #Medicine #POTS #MCAS #Dysautonomia #Genetics #MedSky

Hey #Monsterkids,

Just letting you know as spring approaches, I'm likely gonna get sicker. I'm already slowing down feeling the changes. I have things like #MCAS & bad #allergies. I also have #immunesystem issues. Forgive me for slow replies. I'll still be around & posting tho. 🖤

#chronicillness

Sometimes I know the labs will take a couple days, but I STILL find myself checking the portal every few hours … or multiple times an hour 🙈

#NEISVoid #Disability #Disabled #Labs #Labwork #ChronicIllness #Spoonie #Tubie #FeedingTube #Gastroparesis #EhlersDanlosSyndrome #HEDS #MCAS #JTube #GTube

Disabled life means waking up to lab results, MyChart messages, appointment reminder calls, and more 🫠

#NEISVoid #Disabled #Disability #ChronicIllness #Spoonie #Tubie #FeedingTube #Gastroparesis #EhlersDanlosSyndrome #HEDS #MCAS #Dysautonomia #POTS #PosturalOrthostaticTachycardiaSyndrome

I’m cold. It’s 11pm. The heat goes down to 64 during the night. I want to curl up in my heated blanket, but I need to do tube care first. Doing tube care means exposing my abdomen to The Cold 🥶

#NEISVoid #Gastroparesis #Spoonie #Tubie #FeedingTube #Disabled #Disability #ChronicIllness #HEDS #MCAS

I have to use silver nitrate to treat granulation tissue around my #GTube. I hate doing this because it’s sooo painful and then the tissue keeps coming back 😭

#NEISVoid #FeedingTube #Tubie #Spoonie #ChronicIllness #Disabled #Disability #Gastroparesis #EhlersDanlosSyndrome #HEDS #MCAS

The Languages of Ehlers-Danlos Syndromes, MCAS, and POTS: Words Count How do you articulate your experience?              Yes, this is a loa…

What language do you speak when you speak of yourself as a person living with EDS?

#BlogPost #Language #SpeakYourTruth #EDS #hEDS #MCAS #POTS #HolisticHealth #SelfCare 💕 #Wellness

Ich bin gerade dabei meine Tagebücher der letzten vier Jahre durchzugehen (es kommt mir vor wie zehn), und ehrlich gesagt, wenn man das als Roman schreiben würde, wäre es kaum zu glauben. 1/2

#LongCovid #MECFS #MCAS