Last month the world recognized Rare Disease Day on February 28th. There are medical conditions that are not rare at all, but still fall into the abysmal cracks in our healthcare system. Some might call these orphan conditions. I live with one of these conditions – postural orthostatic tachycardia syndrome (POTS).
POTS is fairly common, but is rarely discussed in medical school, rarely highlighted by the media, and rarely the focus of pharmaceutical industry interest. POTS patients are rarefied in every way possible… except for the fact that there are over 1 million of us in the US alone. POTS might be the most common medical condition that no one has ever heard of.
Mayo Clinic researchers estimate that 1 in 100 teens develops POTS. Including adult onset patients like myself, there are an estimated 1 to 3 million Americans living with POTS. 85% of patients are female, most often between the ages of 12-50.
POTS is one of the most common forms of dysautonomia. Dysautonomia (pronounced dis-oughta-no’-me-uh) is an umbrella term that includes many different disorders of the autonomic nervous system, which impact over 70 million people worldwide. The autonomic nervous system originates deep in the brain and extends from the top of your scalp to the bottom of your feet. It is responsible for regulating involuntary bodily functions including your heart rate, blood pressure, digestion, kidney and bladder function, temperature control, sweating, tear and saliva production, and even your immune system. There are very few processes that go on in your body that don’t involve your autonomic nervous system in some capacity.
POTS symptoms can include lightheadedness, a fast heart rate, fainting, fatigue, chest pains, shortness of breath, GI motility problems, nausea, migraines and more. Most of these symptoms are due to blood pooling in the lower limbs of POTS patients when they stand up, which doesn’t leave enough blood flowing to the heart, lungs and brain. The symptoms tend to worsen when the patient stands up, and are improved when the patient lies down.
Experts compare the disability seen in POTS to the disability seen in congestive heart failure or chronic obstructive pulmonary disease. Some patients are able to continue with normal daily activities, but 25% of patients are so disabled by POTS that they cannot work or attend school. Some patients require the use of a wheelchair or become bedridden.
[Many doctors are not familiar with POTS, or perhaps they have heard of it, but are not quite sure how to diagnose it. As a result, the average POTS patient takes six years to get diagnosed. While several studies from major academic research centers show that POTS patients have normal psychological profiles, about 85% of POTS patients are given psychiatric labels prior to being diagnosed with POTS. The multitude of symptoms caused by their autonomic dysfunction are often dismissed as anxiety or they are told that their symptoms are “all in their head.