Senior Research Director - Chiari EDS Center ~ chiariedscenter.com ... #hEDS #EDS #Chiari Lousy chess player. All opinions are my own
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New clinical research from the Chiari EDS Center of Mount Sinai South Nassau - outlining a protocol for standardizing the assessment of craniocervical instability downstream of connective tissue dysfunction/Hypermobile Ehlers-Danlos. #EDS #hEDS #CTD link.springer.com/article/10…
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Our Director of Translational Research, Dr. Allison Bloom, summarizing the clinical framework for Neuro-EDS, a distinct phenotype encompassing the neuromuscular, autonomic, and inflammatory dysfunction downstream of Connective Tissue Disorder. piped.video/watch?v=afX-TYj9…
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John Biggins retweeted
New research via EDS Chiari Center
#EDS tied to many disabling syndromes like Chiari Malformation, Tethered Cord, #POTS and Dysautonomia, Mast Cell Activation Disorder #MCAD, Styloid Hypertrophy, Myalgic Encephalomyelitis-Chronic Fatigue Syndrome #MECFS
frontiersin.org/journals/neu…
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Please see the latest publication from The Chiari EDS Center of Mount Sinai South Nassau. The diagnoses and surgical demographics of over 700 patients were assessed, showing clear patterns among advanced hypermobility and autonomic/immune dysfunction 1/ frontiersin.org/journals/neu…
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3. Multiple disorders are strongly co-incident with advanced hEDS (eg., Chiari malformation, tethered cord, styloid hypertrophy (Eagle), POTS, MCAD, ME/CFS ..)
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John Biggins retweeted
N = 717!
"460 (64%) individuals were diagnosed with hEDS, 7 were diagnosed with a CTD other than hEDS, and 250 lacked a formal CTD diagnosis.
We found that individuals with hEDS had a higher frequency of certain comorbidities, such as Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome, and neurosurgical intervention compared to individuals without a CTD diagnosis (unaffected).
Of the total cohort, 426 (59%) were diagnosed with Chiari I Malformation, which shared a significant overlap with hEDS. Of those who elected to undergo surgery (n = 612), 61% required craniocervical fusion (CCF). Notably, of the 460 individuals diagnosed with hEDS, 404 chose surgical intervention, of which, 73% required CCF for craniocervical instability."
#MEspine #MEspine24 #MEspine25 #hEDS #EhlersDanlos
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John Biggins retweeted
New study from Ruhoy and Bolognese et al that examines the neurosurgical diagnoses for those with hEDS over 2014-2023. Fantastic! Haven't read it all yet, just skimmed, but includes Chiari, TC, CCI, MALs styloid hypertrophy, and more. 👏👏👏. Thank you Dr. Ruhoy.
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I sincerely thank everyone at @TheEDSociety #glc2024 Philly - the staff, educators, colleagues, and especially the #EDS community in full strength, who responded overwhelmingly to our message of hope from @MS_SouthNassau Chiari EDS Center. Great science ahead! Stay tuned …
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Dear internet … it has been over 30 years. Can we please get some Picard loungewear? avclub.com/captain-s-holiday…
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John Biggins retweeted
Privilege to observe and film my first craniocervical fusion surgery at Mt. Sinai South Nassau @MS_SouthNassau in New York this past week for @4mmfilm. Here you see my neurosurgeon, Paolo Bolognese with his physician assistant, Phil. #MESpine #EDS #LongCovid #MECFS #MCAS
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** GIVING TUESDAY **
It’s Giving Tuesday!
If you are able, I encourage all of you to make a donation to us at the CHIARI EDS CENTER at Mount Sinai South Nassau.
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