POTS PatientsCount.org Newsletter #1

Dear Fellow POTSies,

Thanks for your interest in the POTS Patient Powered Survey. We've posted 25+ different findings at www.PatientsCount.org/findings. There is some great stuff, thanks to our 450 respondents, who donated their data.

We learned much about living with POTS, and about solutions that help many patients. A few highlights include:

The Social Cost of POTS

This jumped out as a huge issue. 96% of patients reported that POTS hinders socializing, and we list the many specific reasons, from fatigue to "having nothing to talk about besides health," plus dozens more. We also looked at the data separately for teenagers, in a separate finding.

Everyday Challenges

We saw proof that POTSies aren't lazy, in ratings of everyday challenges including grocery shopping, showering and other tasks that most people take for granted.

POTS Potty Issues

We calculated prevalence and frequency of common POTS potty issues, including rarely-discussed symptoms that we call "toilet terrors."

Dietary Approaches to Managing POTS

Promising ratings of 18 different dietary approaches.

And there are many more at www.PatientsCount.org/findings.

We've been thrilled to hear from patients that these findings helped their families understand them better, and helped POTS patients feel much less alone. We are also happy to report that several psychologists have used our findings to better help POTS patients, and are using them to write new articles about the POTS experience.

We will keep posting more findings, and we'd love to hear from you.

Finally, if you donated your data to the survey, we thank you mightily! Lots of valuable information came to light as a result of your donation, and more is still coming.

Our best,

Jill Brook & Mike Brook