Our latest findings
August 16, 2015

What helped different groups of POTS patients?

We look at ratings of what helped patients who listed autoimmune disorders, MCAD, and EDS as the cause of their POTS.

Dear Fellow POTS Patients and Supporters,

Our first survey was a big success, and now we are pleased to partner with Wittenberg University researchers and Standing Up to POTS to launch our newest:

The Quality of Life with POTS-Cluster Disorders Survey

This survey was designed by experts who know first-hand about living with POTS and its associated disorders. In fact, the lead researcher, Professor Cathy Pederson, Ph.D., is a mother of a POTS patient, and founded Standing Up to POTS, a non-profit organization dedicated to making life better for patients and their families. The survey is IRB approved by Wittenberg University (IRB#67-201516).

Would you help us by taking the survey? You must be 18 or older, and it takes about 10 – 20 minutes. We need both POTS patients and non-POTS folks, for comparison.

You can learn more or start the survey here.

You can also peruse our results from the first POTS Patient-Powered Survey. There are some great findings about facets of POTS that are rarely studied: Alternative treatments, dietary approaches, how POTS affects relationships, schooling, career, family, finances and daily life.

Together, we can get answers and start feeling better sooner!

Read more

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SHARE

Patient-powered surveys allow us to collect and analyze data very quickly. We are fellow patients, and all we need is for other POTS patients to share their experiences by completing this anonymous survey. We'll do the statistical analyses and publish our findings here.

LEARN

Our survey seeks insights and practical solutions that allow POTS patients to live happier and healthier. It's the same information we exchange on Facebook support groups each day, only with the added structure of statistical analysis. It can help us paint a more complete picture of POTS, and reveal helpful insights.

IMPROVE

Our surveys may draw from any and all disciplines that can offer help: Nutrition, fitness, psychology, disability law, folk wisdom...heck, we are open to anything if it's helping people. We are all about reporting any knowledge that can improve the lives of POTSies.