In 2019, my best friend Jill’s life changed with the sudden onset of Postural Tachycardia Syndrome (PoTS).

PoTS is a disorder of the autonomic nervous system, causing disabling symptoms throughout the body, which make the most mundane of activities a mammoth effort: sitting up to eat, brushing your teeth; leaving the house can become close to impossible.

Currently, there is no cure, and management options are limited.

The lack of awareness of PoTS and the resulting delay in access to resources and medication to ease her everyday life was one of the biggest challenges for Jill; it took 6 months of intensive research and multiple doctors to diagnose the condition, and a further year to access a specialist who could begin trialling medication.

Without the information and support of PoTS UK in those first years, it would have taken far longer to access treatment.

The average time from onset to diagnosis is 7 years: something PoTS UK are working hard to change.

Whilst she has now found great medical support to help manage the condition, there are few educated in the diagnosis, treatment and care of those living with PoTS. As PoTS can be triggered by a virus, post-covid onset PoTS is contributing to a huge surge in cases, meaning the urgency for awareness has never been greater.

The more funding PoTS UK receive, the more funds that can be focused towards supporting patients and research into the condition, its causes, treatment and possible cures.

Anything that we can do to help raise awareness of PoTS and fund research into ways to ease the struggles faced by those living with this disabling condition would be, quite simply, life-altering.

https://www.potsuk.org

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