In December of 2013, Dysautonomia International conducted a survey of over 700 POTS patients to better understand the experiences that POTS patients have as they interact with physicians. The results emphasize the difficulties POTS patients encounter in obtaining and accurate diagnosis and receiving adequate medical care once they are diagnosed with POTS.
Highlights from the report:- The average diagnostic delay for a POTS patient is 5 years and 11 months.
- Only 25% of patients are diagnosed within the first year of symptoms.
- 50% of patients traveled more than 100 miles from home to receive POTS related medical care.
- Prior to being diagnosed with POTS, 59% of patients were told by a doctor that their symptoms were "all in your head."
- Prior to being diagnosed with POTS, 69% of POTS patients were diagnosed with an anxiety disorder. However, peer-reviewed research demonstrates that POTS patients are no more likely to be anxious than the general public.
- 27% of patients visited more than 10 doctors for their symptoms before finally being diagnosed with POTS.
- 34% of survey participants were teenagers when they first developed symptoms of POTS.
View the full report, Physician Patient Interaction in Postural Orthostatic Tachycardia Syndrome.
This report documents what many families impacted by POTS already know - finding a doctor that understands autonomic disorders and knows how to properly diagnose and treat them is very difficult. POTS patients are routinely dismissed with inaccurate psychiatric diagnoses by doctors who are not familiar with the symptoms of POTS, some of which can look like an anxiety disorder to an untrained eye. Dysautonomia International is working with our Medical Advisory Board on efforts to better educate medical professionals about autonomic disorders like POTS.
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