POTS PatientsCount.org Newsletter #2
Dear Fellow POTSies,
We're happy to report that we have some new results from the POTS Patient-Powered Survey, and that they are getting used to help make life better. We've partnered with Standing Up to POTS, an ambitious non-profit organization, to help find solutions for issues uncovered by the survey. Here are some highlights:
POTS, work & disability:
The findings on work and disability showed that 61% of respondents couldn't attend school or work, even part-time. This was not surprising, given our findings on daily challenges, summarized below:
These findings emphasized the need for patients to be able to gain education and skills from home. In response, Standing Up to POTS created this list of websites where patients can take classes, learn all sorts of skills, or earn degrees - all from the comfort of home. Many of these programs are even free, and teach skills that help people make a living from home. That's great news.
Full detailed findings about POTS, work and disability are here.
Number of doctors seen before POTS was recognized:
Our finding on patients' countdown to diagnosis found that the average patient consulted 8 doctors before finding the one who recognized POTS. It took, on average, 5.8 years to get diagnosed after symptoms were first noticed. To help speed this process for future patients, Standing Up to POTS created several helpful materials for getting the most out of every doctor visit and educating doctors about POTS.
In addition, we created The Stand Test for POTS app for iOS. It allows any patient or doctor to conduct the Stand Test, and get connected to information and resources for getting diagnosed.
Full detailed findings about the journey to diagnosis are here.
Various alternative therapies for POTS: Worth a try?
We also posted findings about a number of different alternative therapies, such as massage, acupuncture, physical therapy, essential oils, and elevating the head of the bed. Many of these therapies helped many POTS patients, and the best part is that multiple therapies could be combined for additive benefit.
We again send huge THANKS to the 450 POTS patients who donated their data and made these findings possible. You can find all 25+ findings here, or learn more about us here.
We'll keep posting findings, and we'd love to hear from you.
Our best,
Jill & Mike Brook