Surviving severe COVID was just beginning of Sophie's health adventure.  She discusses her unexpected COVID-related medical challenges, new job and living situation, the stenting procedure that helped (but not as much as hoped), how she has adjusted to her new situation and how it all has made her even better at her work in healthcare.

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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Attorney Nancy Cavey has spent 39 years representing people with disabilities all over the U.S., and is an expert in helping people qualify based on POTS, MCAS, hEDS and other invisible illness.  In this episode she describes the process, how to maximize your chances of success, common pitfalls, important deadlines and more.  We will have a part 2 with Nancy's colleague in a few weeks, to address disability benefits for people under age 18. Nancy's book about disability benefits for POTS is here.  Nancy's website is here.

Nancy has also written the following free e-books about:

Robbed of Your Peace of Mind

The Disability Insurance Claim Survival Guide for Professionals

Your Rights to Social Security Disability

Postural Orthostatic Tachycardia Syndrome Booklet

Dysautonomia Pamphlet

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

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Find out more about Standing Up to POTS! Check us out on our
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Western folk singer-songwriter Nellie has recorded multiple albums and EPs, toured nationally from Alaska to Nashville, appeared on PBS’s Songs at the Center, opened for Grammy-nominated artists, and become a beloved regular at the Woody Guthrie Folk Festival. Most recently, she was profiled in Forbes for her life as an artist living with postural orthostatic tachycardia syndrome, bringing huge mainstream attention to POTS in the process.  In this episode she shares her thoughts, experiences and wisdom on living with POTS, adjusting to major life changes, staying strong, redefining oneself and much more.

Nellie's article in Forbes is here.

Nellie's "Freedom Song" music video is here.

Nellie's music is available for purchase here.

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Dr. Spiritos is double board certified in gastroenterologist and internal medicine, and specializes in IBS, gut motility, POTS and the complex conditions and symptoms that go along with it.  He and Dr. Dempsey discuss IBS, parasites, SIBO, CD117 staining, GLP-1 drugs for MCAS, his treatment approach, some promising news on the awareness front, and much more.  

Dr. Spiritos's website is here

Dr. Dempsey's website is here

 If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
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Vascular surgeons Dr. Robert Hacker and Dr. Deena Chihade share their unusual path to POTS via looking at the venous system, and explain what they are seeing in patients before and after addressing venous compression syndromes such as May Thurner Syndrome and Nutcracker Syndrome.  Dr. Hacker estimates that venous obstructions may play a role in more POTS patients than previously thought, and Dr. Chihade shares the research study she presented at the Dysautonomia International poster session. Both doctors explain how their clinic tests and treats patients for potential compressions and what the stenting procedure is like.  Their website is https://stlvascular.com/.

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Heather is a Nurse Practioner with long experience in vascular medicine, a dysautonomia patient herself, and is now working with a vascular clinic in Toledo, OH to bring genetic testing and counseling services to patients with suspected genetic connective tissue disorders, such as vascular EDS, Loeys-Dietz Syndrome, Marfan Syndrome and more.  She also sees patients with vascular compressions, pelvic venous disease, venous insufficiency and more.  In this episode she shares her professional and personal insights from the lens of vascular and genetic medicine.  Anyone can call 419 291-2003 to request an appointment to see Heather.  No referral needed unless their insurance requires it.

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Sarah loved her life as a busy mom an accomplished professional dog groomer, but after COVID left her with new symptoms suggestive of the 'Trifecta' (POTS, MCAS, hEDS) she is needing to make a new game plan....one that doesn't involve so many hours of standing and triggering fragrances.  In this episode she discusses what she went through to get a diagnosis and how -- with the help of supportive family -- she is working through the challenges to design a new lifestyle.

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Find out more about Standing Up to POTS! Check us out on our
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

One of the most common questions we get from listeners is about the novel treatments that Dr. Dempsey mentions, such as therapeutic plasmapheresis exchange (or apheresis), SOT, ozone therapy, UV light blood irradiation and more.  In this episode she discusses each treatment:  What it is, how it works, the risks and benefits, who is a good candidate, and more.

More information about Dr. Tania Dempsey and her clinic can be found at https://drtaniadempsey.com/. 

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
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Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Dr. Jennifer Curtin is Medical Director of the RTHM clinic and former complex chronic illness patient herself, after having ME/CFS while in medical school.  Now her team has created the RTHM intelligence platform which uses HIPAA-compliant artificial intelligence and other technology to provide guidance and care for people with Long COVID, ME/CFS, MCAS, POTS, hEDS and related conditions.  In this episode she discusses the features, purpose, possibilities and how this free platform can help improve access to answers, insights, testing and treatment for patients with these complex conditions.  if you would like to try the platform, it is free and can be found here.

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standimg Up to POTS! Check us out on our
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Jace had hEDS and POTS for years before it was diagnosed and then had to wait MORE years to start getting any treatment, but in the meantime graduated college, got an advanced degree, worked on state and federal health policy, made art and much more.  Hear Jace's advice and words of wisdom as someone who has expertise when it comes to ADA and accommodations.

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

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Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
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Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.