Dysautonomia Intl. (@Dysautonomia) / X

Dysautonomia Intl.

10.3K posts

Dysautonomia Intl.

@Dysautonomia

Dysautonomia International is a 501(c)(3) non-profit that raises funds for research and promotes awareness of disorders of the autonomic nervous system.

Global

dysautonomiainternational.org

Joined May 2009

Dysautonomia Intl.
@Dysautonomia
Jun 22, 2021
Hey @Jeopardy no one with any credibility calls POTS "Grinch Syndrome." Promoting outdated misogynistic terms to describe a debilitating autonomic nervous system disorder that impacts millions of Americans is not cool. We request an apology on behalf of our community. Do better.
Dysautonomia Intl.
@Dysautonomia
Dec 18, 2022
New research from @JohnsHopkins finds #POTS is the most common new medical condition diagnosed in people with #LongCOVID, and causes more people severe disability than any other Long COVID related condition. medrxiv.org/content/10.110… 1/🧵
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Dysautonomia Intl.
@Dysautonomia
Jun 22, 2021
Replying to @Dysautonomia and @Jeopardy
This appeared on Jeopardy tonight. Grinch syndrome is an offensive term. Can you imagine Jeopardy making light of cancer or MS patients with a "funny" name for their debilitating health condition? Not acceptable. We'd love to see real questions about the autonomic nervous system.
Dysautonomia Intl.
@Dysautonomia
Feb 23, 2022
🔥Hot off the press!🔥 New POTS research suggesting #POTS might be a mixed autoinflammatory/autoimmune condition from Dr. Grubb & Dr. Gunning at University of Toledo. Get ready for a thread...🧵👇
Dysautonomia Intl.
@Dysautonomia
Mar 9, 2024
Nearly 150 years later and many doctors are still diagnosing “hysteria” in women under more palatable modern names, failing to diagnose and treat their actual diagnoses - POTS, MS, Sjogren’s, lupus, cancer, neuropathy, etc. - all still being misdiagnosed as psych issues in 2024.
Dr Mark Guthridge
@Dr_M_Guthridge
Mar 8, 2019
Thread. Medical Hysteria and #InternationalWomensDay In 1882, Anna O is considered 'patient zero' for the diagnosis of "Hysteria" #Hysteria was originally a diagnosis only given to women Anna O fell ill in 1880 after her father died, possibly of Tuberculosis
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Dysautonomia Intl.
@Dysautonomia
Aug 1, 2023
In this @CBSNews story, we ask why the @NIH is wasting $ studying computer games to treat brain fog, rather than treatments aimed at the underlying pathology of brain fog: inflammation, microclots & reduced blood flow to the brain upon standing. 1/🧵
First long COVID treatment clinical trials from NIH getting underway
From cbsnews.com
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Dysautonomia Intl.
@Dysautonomia
Sep 17, 2022
Swedish researchers just published the first #POTS symptom score, based on the 12 most common symptoms reported by 1000s of patients in the Big POTS Study, a collaboration between Dysautonomia International, Vanderbilt & Univ of Calgary. This is progress! onlinelibrary.wiley.com/doi/full/10.11…
Dysautonomia Intl.
@Dysautonomia
Dec 30, 2022
Active COVID virus found replicating in brain & other tissues 7 months after infection. Also found in peripheral nerves & sensory ganglia. We need anti-viral trials for #LongCOVID ASAP, not just Paxlovid, but a whole arsenal of different anti-virals targeting different mechanisms
Morgan Stephens
@morganstephensa
Dec 29, 2022
Breaking my Twitter hiatus to share some important research. Latest in @Nature find replicating (meaning active) Covid-19 in brain and body tissue in 44 autopsy patients up to seven months out from acute infection. See thread for details and link.
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Dysautonomia Intl.
@Dysautonomia
Apr 30, 2023
We urge researchers to incorporate masking for all study personnel as a patient safety measure in your #LongCOVID studies. Even if you don’t care about protecting your staff, you should care about protecting your patients and not muddying your data with subsequent infections.
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Dysautonomia Intl.
@Dysautonomia
Apr 23, 2023
Bindi Irwin spoke up about the dismissal of women who present with serious medical conditions after her endometriosis was disregarded as just pain women ‘deal with’! Did you know women with POTS are also 4x more likely to have endometriosis?
Bindi Irwin: Doctors dismissed endometriosis as pain women ‘deal with’
From washingtonpost.com
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Dysautonomia Intl.
@Dysautonomia
Oct 31, 2022
Autonomic nerves regulate our heart rate, blood pressure, digestion, dilation and constriction of the pupils, kidney function, temperature control, and much more! People living with dysautonomia have trouble regulating these systems, which can impact the entire body!
Dysautonomia Intl.
@Dysautonomia
Nov 24, 2022
Important new #POTS research from Karolinska Inst. funded by Dysautonomia International has found biomarkers associated with a hypercoagulable & proinflammatory state, enhanced cardiac contractility & hypertrophy, skeletal muscle deficits, cartilage protein deficits & more. 1/🧵
Dysautonomia Intl.
@Dysautonomia
Jul 11, 2022
Replying to @Brain1878
This is garbage pretending to be science. Tilt tests are an awful experience for POTS patients. The patients in this study had POTS for up to 18 years. Of course they had mild anticipatory anxiety about a test they’ve likely had many times before that causes miserable symptoms.
Dysautonomia Intl.
@Dysautonomia
Jul 17, 2023
On our way to meet with over 100 House and Senate offices on Capitol Hill today to demand more research in funding for #POTS and other forms of #dysautonomia! You can participate from home by sending an email and calling your elected officials. Details at bit.ly/FundPOTS
00:00
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