DINET

The Dysautonomia Information Network is a volunteer run nonprofit organization dedicated to promoting dysautonomia awareness, education, support and networking.

[DINET @DINETorg]

Sexual dysfunction and POTS - A study by Dr. Blitshteyn shows POTS impacts men and women with reduced desire, satisfaction, and Erectile function in men. This was a study partially funded by DINET. https://t.co/Iog6Pne3w0

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

Happy to see our paper on neuropsychiatric manifestations of #MCAS published today.
🧠 Depression, anxiety and panic disorder were highly prevalent
🫀 #Dysautonomia/#POTS and #EDS were common comorbidities
‼️ Neuropsychiatric manifestations improved or resolved with mast-cell-directed therapies.

#NeuroTwitter #MedTwitter #Psychiatry #Neurology

https://t.co/w5abWWwJQ7

[DINET @DINETorg]

WE NEED YOUR HELP!
As a part of this year's DINET Dyscussion series, DINET is asking you to share a video about living with dysautonomia.

Sharing is EASY with our step-by-step tutorial!
https://t.co/LN3b3xNvER
#dysautonomia #pots #ehlersdanlos #chronicillness #invisibleillness

[DINET @DINETorg]

Meet Tina, Licensed Clinical Mental Health Counselor (LCMHC) and caregiver, the third speaker in this year's DINET Dyscussions!

https://t.co/eEh5gIdH79
#dinet #dysautonomia #DysautonomiaAwareness #chronicillness #invisibleillness #pots #potssyndrome #ehlersdanlossyndrome

[DINET @DINETorg]

Meet Lori, Master’s level clinician and caregiver to someone with chronic illness, the second speaker in this year's DINET Dyscussions!

https://t.co/zkaErnFJd8

#dinet #dysautonomia #dysautonomiawarrior #DysautonomiaAwareness #chronicillness #chronicpain #chronic #pots

[DINET @DINETorg]

Meet Lori, Master’s level clinician and caregiver to someone with chronic illness, the second speaker in this year's DINET Dyscussions!
https://t.co/eEh5gId9hB
#dinet #dysautonomia #DysautonomiaAwareness #chronicillness #invisibleillness #pots #potssyndrome #ehlersdanlossyndrome

[DINET @DINETorg]

WE NEED YOUR HELP!
As a part of this year's DINET Dyscussion series, DINET is asking you to share a video about living with dysautonomia.

Sharing is EASY with our step-by-step tutorial!
https://t.co/LN3b3xNvER
#dysautonomia #pots #ehlersdanlos #chronicillness #invisibleillness

[DINET @DINETorg]

Meet Susanne, retired RN living with POTS and DINET forum moderator, the first speaker in this year's DINET Dyscussions!
https://t.co/eEh5gIdH79

#dinet #dysautonomia #dysautonomiawarrior #DysautonomiaAwareness #chronicillness #chronicpain #invisibleillness #pots #potssyndrome

[DINET @DINETorg]

We are SO excited to share with you that DINET Dyscussions is BACK this October for Dysautonomia Awareness Month!

https://t.co/zkaErnFJd8

#dinet #dysautonomia #DysautonomiaAwareness #pots #potssyndrome #ehlersdanlossyndrome #chronicpain #chronicillness #chronicfatigue

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

Excited to have the first paper published today in our @JPM_MDPI special issue on #Neurology and #autonomic disorders that I am guest editing. This is a nice study demonstrating that at home measurements of supine and standing blood pressure is more sensitive than in-office BP measurement to identify orthostatic hypotension in patients with #Parkinsons disease.
#NeuroTwitter @RuhoyMD @JenniferRobblee
https://t.co/pB3MqWMZMG

[DINET @DINETorg]

The more data collected the better we understand what can help or what can hurt

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

If exercise is proven to be ineffective or harmful, it'll be demonstrated by data in the trial so while many people are worried/upset, #Science will tell us if and what type of exercise is beneficial or harmful to patients. Read my article on #POTS here:
https://t.co/yOF7pcEDus

[DINET @DINETorg]

Things to think about when preparing to apply for disability
#POTS #Dysautonomia #chronicillness
https://t.co/rVd7Omu7sw

[Dysautonomia Intl. @Dysautonomia]

@dysclinic @dianaberrent @NIH We share Diana’s concerns about RECOVER, but are hopeful that the autonomic trial will lead to some progress in clinical care, not because of RECOVER, but despite RECOVER. The autonomic experts involved have had their ideas watered down by people who no nothing about autonomics.

[Dysautonomia Intl. @Dysautonomia]

Have you developed new or worsening #POTS/#dysautonomia after a COVID vaccine? The National Academies is holding a public hearing on COVID-19 vax adverse events on March 30, 12pm EDT. Share your stories & ask them to review the literature on POTS/dys. https://t.co/5XLbnk6dyT

[The Ehlers-Danlos Society @TheEDSociety]

We are just ONE week away from our virtual EDS ECHO Summit Series: #HypermobilitySpectrumDisorders (HSD) conference, taking place on April 1.

⁠Up to 5.5 CME/CEU/CE Credits available for health professionals to claim for sessions that are viewed LIVE.⁠ https://t.co/pVzHpK8ifp

[DINET @DINETorg]

Today is Long COVID Alliance awareness day. If you or a family member has lingering symptoms after a COVID-19 infection - visit https://t.co/RykcVEkygc
DINET is a proud member of the Long COVID Alliance organization. #POTS #LONGCOVID #dysautonomia #chronicillness

[DINET @DINETorg]

Compass Points the Way by Alexis Kline is the story of a young life interrupted by POTS, as told by a young woman living with POTS. This is a worthwhile read for patients and caregivers of any age. Read a preview https://t.co/PvgO27aEoS #POTS #dysautonomia

[DINET @DINETorg]

Receiving a new diagnosis can come with many mixed emotions. This video shares the struggle many of us go through during and after finding out the name of a new illness.
https://t.co/lrvBaitwgx
#dysautonomia #pots #potssyndrome #chronicillness #chronicpain #invisibleillness

[DINET @DINETorg]

A Gentle Reminder: Just because you don’t have an official diagnosis, doesn’t make your symptoms or journey any less valid. It can take months to years to figure out what is going on. Trust yourself!

#dinet #dysautonomia #chronicillness #chronic #pots #longcovid

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

Just had this patient who yet again was misdiagnosed with #FND. Patient did not have FND: she had #POTS, #EhlersDanlosSyndrome, large fiber peripheral #neuropathy and #MCAS. Misdiagnosis with FND is a problem in our field that needs to be addressed.
#NeuroTwitter #MedTwitter