Discover and read the best of Twitter Threads about #VEDS

Most recents (5)

Day 823 of my #longcovid battle
a thread.
This will mostly be rambling, screaming out into the void as I've felt even more disconnected as my health continues to deteriorate.
Took cpl hrs to get this out & is all over the place but that's ok too.
"mild" case of covid February 2020 led to LC rearing it's ugly head by June 2020. In 1styear, I went from being healthy & active to suffering 100+ symptoms.
Each dr visit & scan found further degeneration & damage. I was met w dismissal & gaslighting from med community.
I found great solace & help in the LC communities on social media. It gave me strength to keep advocating for healthcare & finding ways to self manage symptoms until I could find a dr to listen.
I firmly believe I wouldn't have survived w out y'all.
Read 22 tweets
So excited to watch this interview between @polybioRF s @microbeminded2 and @MS_SouthNassau’s @RuhoyMD that I’m going to live tweet it. Dr. Ruhoy is a neurologist with a Ph.D in environmental medicine who works with #longCOVID #mecfs #EDS patients.
Ruhoy describes her long-standing interest in integrative medicine, natural approaches, and environmental medicine. She’s even a certified medical acupuncturist! She now helps lead a neurosurgery practice. 😍😍😍
Ruhoy: “I was an environmentalist from when I was very young and I believe that the world around us plays a role in our health. Even before I was a doctor, I would always try to find ways of living a healthier life. I saw no reason why I couldn’t combine it.”
Read 58 tweets
Excited to share my new paper with @ActinDomain! We are proposing an updated definition of #EDS/#HSD, and explain how they could all be disorders of membrane-bound collagen. We explain the science in our new publication in @FrontCellDevBio.… Image
Please also see the blog on @hEDStogether for a shorter and more easier-to-read lay summary of the main findings!…
In our review, we explain how fibroblasts play a significant role in the connective tissue, by adhering to collagen and pulling on it to control tissue tension via a mechanism called “tensional homeostasis”…
Read 11 tweets
I am so angry. So much of Jenny’s case should / could have been caught when she was a child or teen, before she ”got sick.” It would not be hard to get this right. We do not need some miraculous feat of science to put into practice what we already know to be true.
Any ME org that is not joining forces with other organizations to educate the ME community on #EDS and #MCAS, that is not talking about comorbidities, is failing patients. I count @MEActNet in that boat. We have got to do better.
Jenny was diagnosed with ME when she fell ill at university, but she was born with #vEDS, which has a genetic marker. She had obvious phenotypical signs, but they were all missed.
Read 4 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:…
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:
Read 11 tweets

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