Sounds like a simple command; one ordinarily taken for granted.
What if standing up made your heart rate soar? What if standing up made your head pound? Or your legs shake and your body tremble? Then, “Stand up!” is anything but a simple command. If you have Postural Orthostatic Tachycardia Syndrome, or POTS, simply standing is an accomplishment.
POTS, sometimes referred to as non-familial dysautonomia, is not a disease. POTS is an array of symptoms which may indicate an underlying dysfunction of the autonomic nervous system. The autonomic nervous system regulates virtually all of the involuntary functions in our bodies including heart rate, blood pressure, temperature regulation, digestion, and sleep. These go on in the background — you don’t think about them. You take them for granted.
Symptoms associated with POTS are often vague and intermittent, difficult to explain and almost impossible to duplicate on a doctor’s visit. There is little consistency of symptoms within a particular patient and less consistency between patients. This makes diagnosis incredibly challenging, especially to a doctor not experienced with this rare disorder. And so the condition continues and symptoms continue and the severity grows and patients become increasingly disabled waiting for an accurate diagnosis and effective treatment.
Please Stand Up!
Red Lily Foundation is devoted to finding the cause and treatment for POTS and related disorders.
Our mission, our energy, is directed toward research, medical education and increasing awareness of POTS.
We established Red Lily with the goal of finding the cure for POTS and related disorders. The mission includes improving physician education to expedite proper diagnosis and treatments, as we support research to find the cure for POTS.
By the numbers:
POTS affects between 500,000 and 1,000,000 Americans *
- far too many are disabled
- too many are children and teenagers who are virtually bedridden
- women are affected 5:1
What we do know is that research is desperately needed because
- it takes years for patients to get an accurate diagnosis
- there is no consistency in the diagnostic process
- it is difficult to even discuss as there is no uniformity in nomenclature and different terminology ensures you are rarely on the same page from research to physician to patient
* Concrete statistics are unavailable, further reinforcing the need for research.
The inaugural Run to Stand 5K was a smashing success, raising more than $16,000 for the Red Lily Foundation.
Donations will go toward finding the cause and treatment for POTS and related disorders.
A huge Thank You to our participants, donors and sponsors. We couldn’t have done it without the support of each and every one of you.
Stay tuned for our next event!