The POTScast E165: Mast Cell Matters: Creating a documentary on MCAS, POTS, & EDS with Dr Weinstock

Dr. Weinstock and Dr. Dempsey are spearheading the creation of a documentary about MCAS, POTS, and EDS. Still in the planning stages, this documentary intends to educate medical professionals and the general public. We hope that it will help raise awareness!
Standing Up to POTS is a non-profit organization dedicated to improving the quality of life for people with postural orthostatic tachycardia syndrome (POTS) through research, advocacy, and support.
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[@julieh6922]

My son has been sick since getting covid in December of 2023. Was diagnosed with dysautonomia in May, but we have had no relief of symptoms. I feel so bad that he has no quality of life. we are on ER all the time because he feels like he is going to die. This podcast gives me hope. My son just turned 18.

[@user-dj4jt6ug8z]

I am so grateful for having an opportunity to learn more as I have been through the entire process of the alphabet soup of possible diagnosis (the syndromes, ie Fibro and IBS) and being a patient diagnosed later in life during my 50s, it becomes more complex as learning that ALL of the doctors I have seen, dismissed my symptoms as Psychiatric in nature and its a shame the patient is the one that suffers.
And as we know that when you have one Auto Immune Disease, they like to bring friends along Sjorgrens, EDS, POTS/ Dysautonomia etc. I am so interested in being able to contribute, in any way possible. No patient should suffer and feel like they have been passed around the medical system. We have to get this opportunity to fight and advocate for ourselves. Aa a patient dealing with chronic illness , I may have been able to prevent permanent damage to multiple body systems and could have a less siloed approach to my 8 doctors that I currently see. Thank you so much for doing the Documentary and helping patients find their voice and be heard when no one listened.

[@180Floridalife]

I just meet my new va doctor and she didn’t even know what POTs was 🤦‍♂️