Discover and read the best of Twitter Threads about #hEDS

Most recents (5)

💥💥💥 BREAKING NEWS! 💥💥💥

There seems to be a GLOBAL EPIDEMIC of #ChronicIgnoranceSyndrome that is effecting the medical establishment & resulting in constant misinformation & treatments for #ChronicPain #CFS #pwME #Fibromyalgia #hEDS #EDS #Lyme #FND, the list is...1/2
shocking & endless. So during #InvisibleDisabilitiesWeek we ALL have an opportunity to highlight this spread of #ChronicIgnoranceSyndrome, the effect this has had on our #MentalHealth & what we are collectively doing daily to fight this medical ignorance & abuse! 🦓✊ #MAIMES
Read 3 tweets
Adding thread about vascular and nerve entrapment
Thread: Thank you @violetbakes for the pictures backing up the next installment of what I think would be useful to #EDS patients. Something that could be used if going to the hospital
Thread: thank you @ABMollyblum for the next installment of my pinned thread of things I’ve found useful in managing #EDS #EhlersDanlos in my wife and daughter. Info for Gastroenterologists for your GI appt. alanspanosmd.com/wp-content/upl…
Read 11 tweets
DIAGNOSIS: FM, hEDS, & HSD
#Fibromyalgia, #HSD, & #hEDS are subjects of this Twitter Thread. I am a General Medical Doctor who encounters these types of patients.
Undoubtedly, #HSD & #hEDS have genetic underpinnings. My speculation is that the majority, but not all, of the #fibromyalgia patients have clinically manifest joint hyper-mobility & genetic variations as part-cause of their disorders. Below I suggest a study of this matter.
Besides the usual Beighton hyperextensions, clinical manifestations of hyper-mobility include scoliosis (vertebral spine disks are specialized ligaments) & Genu valgus & varum, but that is not all ...
Read 25 tweets
👋🏼 just wanted to share with you a new diagnosis. As suspected, I have craniocervical instability. My skull is compressing my brainstem causing my breathing + other problems. I’m having surgery later this month to stabilize my skull + neck. Learn more: medium.com/@jenbrea/a-new…
Craniocervical instability and atlantoaxial instability are a common complication of Ehlers-Danlos Syndrome, especially #hEDS. I don’t meet the criteria but it’s clear hypermobility is an important part of my clinical picture. #Nightingales
A handful of other #pwme have also been diagnosed with CCI/AAI in the past year including @jeff_says_that who, at one year post-surgery, considers himself in remission from both #POTS and PEM: mechanicalbasis.org
Read 11 tweets
I’m starting a new hashtag, #Nightingales, specifically to connect people with #EDS #hEDS #MECFS #POTS #MCAS #FIBRO. However, all are welcome!
Why these diagnoses? The thesis is that they share either an underlying biological relationship (genetic, environmental, pathophysiological or otherwise) OR a nosological one: they are actually different but often confused for each other. #Nightingales
It’s my hope that by communicating across community, we can all become better informed advocates and allies; help each other find more accurate diagnosis and effective treatment; and discuss science + clinical approaches from an interdisciplinary perspective. #Nightingales
Read 12 tweets

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