POTS By The Numbers

Ok, a cheesy cop out I know, but ya gotta go with the visual that works best...

I suspect that many patients in my position with POTS (Postural Orthostatic Tachycardia Syndrome) and NCS (neurocardiogenic syncope) grow numb to having to constantly explain themselves and this disorder to those around them, including but not limited to:  doctors, friends, nurses, coworkers, family, strangers in line at the store, etc.  Trapped constantly between fighting to live the life you had or want and accepting the restrictions and limitations dysautonomia can force upon you is often a daily battle for many of us in the POTS community.  It's a very real, often debilitating and sometimes disabling medical condition to negotiate. I struggle with this every single day and make a point to enlighten anyone who will listen about this disorder and what it has done to my life and how I fight like hell to get on top of it.  It is exhausting!  So when a major media source, like ABC World News comes along to help shed light on this complicated illness, we in the POTS community get a little excited that maybe our struggle can be better understood by the general population, especially the medical community, so that better research funding and more accurate diagnosis can come about for anyone faced with this medical challenge.

Last night ABC World News presented to their national audience what, in my opinion, was a very brief and highly inaccurate portrayl of POTS. Instead of arguing and tearing apart their news story,  I thought I'd help spread a more accurate view, besides just my own personal battle, by passing on what is currently held to be the common statistics on this chronic illness.

This is POTS By The Numbers...

• > 30  Beats per minute heart rate increase upon the first 10 minutes of standing needed to be formally diagnosed with POTS, the cornerstone of the diagnosis, although POTS is not considered a heart condition, it is a malfunction of the autonomic nervous system, and as such, affects several vital organs, including the heart.
• 500,000-1,000,000 Estimated number of people affected with POTS in America.  The numbers vary so much because of the lack of proper education on POTS within the medical community, and therefore, difficulty in receiving an accurate diagnosis.
• 1 out of 100 Estimated teens affected with POTS
• 5:1  Ratio of female to male patients with POTS
• 25% Percentage of POTS patients that are disabled and unable to work and/or attend school
• 3,000-10,000 Prescribed milligrams of salt needed DAILY to help increase blood volume
• 2-3 Liters of fluid needed along with the salt intake daily 
• 30-40 mm Hg compression socks often needed to relieve blood pooling in the legs and abdominal areas 
• 3 Times more energy needed to stand by POTS patients than non-POTS patients
• 2-5 years- Recovery period, defined as relative absence of orthostatic symptoms alone with the ability to perform daily living activities with minimal restrictions, expected for roughly 50% of those afflicted with POTS
•  80  percentage of POTS patients that will respond to a combination of physical therapy, lifestyle adjustments, and pharamacotherapy 

While some of the above stats are subject to change as new research and treatment options emerge, they are generally considered the most accurate stats presented by leading researchers in POTS. I can only speak for myself, as a POTS patient, but I would love to see more of this kind of  info on POTS spread if only for the fact that taking months and years to receive a proper diagnosis with such a brutal condition is akin to a form of torture.  Please feel free to pass on this information to anyone you think may benefit and check out www.dinet.org and www.ndrf.org to learn more about POTS, NCS and other forms of dysautonomia.  Knowledge is truly empowerment!


 *As a disclaimer, I am not a POTS researcher or doctor or statistician.  I am a patient who's dealt with this condition for over 3 years.  That makes me an expert on me, but only me, so take my information as such.