I am a general practitioner in Birmingham and trustee of a charity called PoTS UK.
Recently you wrote an article about a young woman with PoTS. (Burlesque dancer died 36 times-in-a-year).
In this article you state that ‘Sara Brautigam’s life has been turned upside down by Postural Orthostatic Tachycardia Syndrome, which means her heart stops beating.’
PoTS does not cause the heart to stop beating and it does not cause death.
Unfortunately, this misinformation has terrified a number of young people with PoTS.
I would be very grateful if you would make a statement to correct this error.
The information below may be of assistance.
Postural tachycardia syndrome is a complex condition caused by abnormal functioning of the autonomic (involuntary) nervous system.
PoTS is associated with multiple symptoms and an excessive and sustained increase in heart rate in the upright position which is relieved by lying down.
We tend to emphasise that PoTS is best understood not as one thing, but ‘a bunch of things’; with each patient’s presentation and treatment being best understood on a case-by-case basis.
What can be said with confidence, however, is that while often extremely debilitating and life-altering, patients do not die from PoTS.
PoTS on its own does not cause a heart to stop beating, and it not associated with any alteration in life-expectancy.
If a patient with PoTS were to develop such problems, it would not be explained by their PoTS, but would have to relate to a separate co-existing condition.
Dr Lesley Kavi, Church Road Surgery, Church Rd, Sheldon, Birmingham B26