October 20, 2020 | Dysautonomia, Insights, October, Origins Insights, PoTS, disease awareness, ethnography
As part of Dysautonomia Awareness Month, Origins continues its efforts in raising awareness and understanding of Postural Tachycardia Syndrome (PoTS), a Dysautonomia condition affecting young women that can be very disabling.
October is Dysautonomia Awareness Month. Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. One such medical condition is Postural Tachycardia Syndrome (PoTS).
PoTS can be a life altering and debilitating health condition. Simply standing up can be a challenge for affected people as their body is unable to adjust to gravity. PoTS is due to an abnormal response by the autonomic (automatic) nervous system and is characterised by orthostatic intolerance (the development of symptoms when upright that are mostly relieved by lying down). Symptoms include palpitations, lightheadedness, fatigue, sweating, nausea, fainting and headaches, and are associated with a persistent increase in heart rate from the lying to upright position. PoTS has an estimated prevalence of 0.2% and is most common in females aged 15-50. It was first characterised and defined in 1993. Many healthcare professionals do not know that PoTS exists and so may not think of the diagnosis even if they see people with symptoms.
Earlier in 2020, Origins (supported by then-trainee clinical psychologist Sam Waterman, from Royal Holloway, University of London) collaborated with PoTS UK to conduct a digital ethnographic study to understand the realities of living with PoTS. Dr Morwenna Opie-Moran, Trustee of PoTS UK and Clinical Psychologist affiliated with the London Cardiovascular Clinic, commented that “Working with Origins has been such an eye-opener. Not only has this collaboration enabled us to identify some very meaningful unmet needs amongst our service users, a structure around how to understand the subtleties of these and an indication of how to meet them better; I have also had an insight into how a professional organisation operates.”
Postural Tachycardia Syndrome Awareness Day is on 25th October, fitting perfectly into Dysautonomia Awareness Month. In order to raise awareness of the condition, the PoTS UK team is inviting members to take part in the #PoTSUKChallenge on social media. Origins Health Insights will also be playing their part by sharing information about PoTS and some of the insights gained from our study, ‘PoTS LIVE’ throughout the month.
For more information, please visit the PoTS UK website or contact the Origins team on potslive@origins-insights.com.
This content was provided by Resonant Group
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