Our latest findings
June 21, 2016

The Social Cost of POTS

96% of patients said POTS prevents them from socializing as much as they'd like, almost half of patients go out with friends less than once a month, and we explore the reasons why.

September 15, 2015

What helped POTS?!

450 POTS patients rated 28 different non-drug therapies, including 18 dietary approaches, massage, physical therapy, counseling, essential oils, IV fluids, compression stockings, abdominal binders and more. We list ratings for which therapies "helped lots!" or "helped a little," along with what "made my POTS worse."

Dear Fellow POTS Patients and Supporters,

Our Quality of Life with POTS-Cluster Disorders Survey was a success. Thank you to our 1500 participants! We are busy analyzing the data and publishing papers that will raise awareness and improve treatment. Two are already finished, thanks to our amazing partner and lead author, Dr. Cathy Pederson, who is a neurobiology professor at Wittenberg University and founder of Standing Up to POTS.

You may want to peruse results from our 2015 POTS Patient-Powered Survey, which examined facets of POTS that are rarely studied: Alternative treatments, dietary approaches, how POTS affects relationships, schooling, career, family, finances and daily life.

We are currently working with several groups to produce more online surveys to help researchers understand us better. We hope you'll participate when the time comes. In the meantime, please let us know what you think, and take good care of yourself.

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

Read more

Would you like to be notified of new findings?
We promise never to sell or misuse your email address. You can unsubscribe at any time.

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.