POTSibilitiesParents

~Since 2012, a community of parents sharing strength, support, information, and resources as parents who have children with POTS or other forms of dysautonomia.

[POTSibilitiesParents @POTSparents]

*Not intended as legal or medical advice. Verify all information for yourself, and always check with your doctor before making any changes.

[POTSibilitiesParents @POTSparents]

@dysclinic @amyrochlin You rock, Dr. Blitshteyn. 💗

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

Glad to be a part of the consensus-2 diagnostic criteria for mast cell activation syndrome #MCAS and this new review. MCAS is comorbid with #dysautonomia and #EDS, and the most frequent comorbidity of MCAS is #POTS (from our prior study).
https://t.co/EAjk1fbNE6

[POTSibilitiesParents @POTSparents]

@MW42546506 @dysclinic Some things that come to mind are conditions that require surgery, or which might be directed to a facility’s rehab program. Or that have a lot of fundraising for a facility. I don’t at all mean that there aren’t also amazing doctors & facilities, but cost/effort can be an issue.

[POTSibilitiesParents @POTSparents]

@Anon61152358473 @NeurologistMom It’s just so sad and unacceptable. People are already fighting their/their child’s disease. They shouldn’t have to fight doctors for appropriate diagnosis and treatment, and even for the chance to be seen. ~Jane #POTSparents

[POTSibilitiesParents @POTSparents]

@MW42546506 @dysclinic From what I understand, some doctors/facilities in the US feel that POTS patients need a lot of time but don’t bring in a lot of money. The way our healthcare system is set up doesn’t support situations like ours. 😢😠😥 ~Jane #POTSparents

[nature @Nature]

An antiviral pill has, for the first time, been shown to prevent COVID-19 in people exposed to the SARS-CoV-2 virus

https://t.co/OgfUZ00Hd4

[POTSibilitiesParents @POTSparents]

PCOS has a new name! It’s being changed to more accurately reflect the condition’s multisystem and diverse features. The new name is polyendocrine metabolic ovarian syndrome (PMOS). #Dysautonomia #POTS #LongCovidKids #POTSparents #PCOS

https://t.co/9Ivkz5u598

[POTSibilitiesParents @POTSparents]

Wishing a lovely Mother’s Day for all the moms and people in mom roles, who love deeply and fight fiercely. 💗🌸 #POTS #POTSparents #LongCovidKids

[POTSibilitiesParents @POTSparents]

Did your kiddo have a heart monitor between July 2022 and July 2024? Check with your doctor about the software issue that caused these heart monitors to be recalled. #Dysautonomia #POTS #POTSparents #LongCovidKids
https://t.co/zbMQvkW6BY

[POTSibilitiesParents @POTSparents]

Way to go, Dr. Blitshteyn! #Dysautonomia #POTS #POTSparents #LongCovidKids

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

Very honored to have been invited to join the Neurological Agents Working Group for the NIH RECOVER-Treating Long COVID initiative. Looking forward to discussing and reviewing potential therapies for #LongCovid.

@AANmember @Jacobs_Med_UB @DrABrashear

[POTSibilitiesParents @POTSparents]

Happy Hanukkah to all who celebrate! #Dysautonomia #POTS #POTSparents #LongCovidKids

[POTSibilitiesParents @POTSparents]

Merry Christmas to all who celebrate! #Dysautonomia #POTS #POTSparents #LongCovidKids

[POTSibilitiesParents @POTSparents]

@dysclinic That’s so encouraging to hear!

[POTSibilitiesParents @POTSparents]

For Americans who get their health insurance through the Marketplace (Obamacare/ACA), open enrollment ends December 15. #Dysautonomia #POTS #POTSparents #LongCovidKids #healthcare

[POTSibilitiesParents @POTSparents]

Learn from pediatric POTS expert, Dr. Jeffrey Boris, in this upcoming, free webinar from @Dysautonomia ! #Dysautonomia #POTS #POTSparents #LongCovidKids

[Dysautonomia Intl. @Dysautonomia]

Join Dysautonomia International on Nov. 12th for a free webinar with Dr. Jeffrey Boris to discuss his new research findings from his survey on long term outcomes in pediatric #POTS. Register at https://t.co/E1aNTJlzAg

[Dysautonomia Intl. @Dysautonomia]

Suffering through years of diagnostic delay and misdiagnosis is not acceptable! Help us reduce diagnostic delays in #POTS and other forms of dysautonomia by making a contribution to support our clinician education programs at https://t.co/KA1iT8VWGV. #DysautonomiaAwarenessMonth

[POTSibilitiesParents @POTSparents]

Happy Dawali to all who celebrate! #Dysautonomia #POTS #POTSparents #LongCovidKids

[POTSibilitiesParents @POTSparents]

Pediatric POTS expert Dr. Jeffrey Boris, speaking on his research on long term outcomes in pediatric POTS! #Dysautonomia #POTS #POTSparents #LongCovidKids

[Dysautonomia Intl. @Dysautonomia]

Join Dysautonomia International on Nov. 12th for a free webinar with Dr. Jeffrey Boris to discuss his new research findings from his survey on long term outcomes in pediatric #POTS. Register at https://t.co/E1aNTJlzAg

[POTSibilitiesParents @POTSparents]

POTS families, a great opportunity to support Dysautonomia International while getting yummy food! #Dysautonomia #POTS #POTSparents #LongCovidKids

[Dysautonomia Intl. @Dysautonomia]

Friday, Oct. 18th, Panda Express will hold a virtual fundraiser during #DysautonomiaAwarenessMonth to benefit Dysautonomia International. All US locations will be participating during open hours (10:30am-9:30pm, varies by location). Learn more at https://t.co/5He4KnV4KT

[POTSibilitiesParents @POTSparents]

Happy Canadian Thanksgiving! 🍁 #Dysautonomia #POTS #POTSparents #LongCovidKids