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.
We’re here to offer help & support
Some of our members have shared their experience of PoTS. Their stories describe how their PoTs began and their road to a diagnosis, and we hope that sharing them will help others to find the best way forward when confronted with the difficulties that PoTS presents.
I’d like to share that I’m so proud of what my daughter, Rachel from North Uist in the Outer Hebrides, has achieved. 23 year old Rachel...
My name is Jaime, I’m 29 years old from Atlantic Canada. May 18th, 2022 is the day I got COVID, and the day my life changed. Before this, I worked...
My name is Summer and I am 28 years old. It has been almost 1 year since my PoTSfelt as though it arrived overnight. I had a pre-syncope on my way to ...
Postural Tachycardia Syndrome (PoTS) was first suggested (along with MCAS) by my GP in 2024 following a trip to A&E with an elevated heart rate,...
🏃 Run South London 2027 – Charity Places Now Open! 💜
We're excited to announce that PoTS UK has secured 5 charity places for the Run South London on Sunday 14th March 2027!
Run South London is a brand-new closed-road half marathon, set to become one of London's ...most exciting running events. The 13.1-mile route will take runners through Morden, Wimbledon and Mitcham, passing iconic sporting locations and bringing together thousands of runners and spectators.
Whether you're an experienced runner or looking for a new challenge, we'd love to have you on #TeamPoTSUK!
💜 Minimum fundraising target: £500
Every pound you raise will help PoTS UK continue providing trusted information, support, education and advocacy for everyone affected by PoTS.
👉 Apply for your charity place today: https://www.surveymonkey.com/r/CYD22KY
Places are limited, so don't miss your chance to run for PoTS UK!
#RunSouthLondon #HalfMarathon #TeamPoTSUK #PoTSUK #Fundraising #CharityRun #RunningForACause
Sir Stephen Timms told the BBC the interim review of Personal Independence Payments (Pip) in England and Wales had found it to be "not fit for purpose".
Sir Stephen Timms says personal independence payments (Pip) in England and Wales need changing.
www.bbc.co.ukHuge congratulations to Enya! 🌿
We're delighted to congratulate Enya on winning a Silver Award for her beautiful Invisible Balance Garden at the RHS Badminton Flower Show this week.
Enya was diagnosed with orthostatic hypotension (a form of autonomic dysfunction) around ...six months ago. She designed her garden through the perspective of someone living with this condition, while also reflecting her experience as a neurodivergent individual. As many people living with PoTS are also neurodivergent, this thoughtful design helps highlight the realities of living with these often invisible conditions.
🌸 Can you help Enya? 🌸
Enya is also in the running for the People's Choice Award, with voting closing Friday at 4pm.
We'd love our community to support her by casting a vote. She is listed in the Pocket Planting category as:
'The University of Sheffield: The Invisible Balance Garden'
Vote here: https://www.rhs.org.uk/shows-events/rhs-badminton-flower-show/awards/rhs-peoples-choice-award
We wish Enya the very best of luck and thank her for raising awareness of autonomic conditions and the challenges faced by people living with PoTS, particularly in this hot weather! 💜
#InvisibleIllness #RHSBadmintonFlowerShow #Neurodiversity #RaiseAwareness #PeoplesChoiceAward
PoTS UK is coming to Edinburgh!
We'll be in Edinburgh on Tuesday 29th September and would love the opportunity to meet members of our PoTS community for an informal coffee and chat.
If you'd be interested in coming along, please let us know by commenting below. It would... be lovely to see how many people might be able to join us!
We're also looking for suggestions for a suitable accessible café or venue in Edinburgh where we could host this informal drop-in. If you know somewhere that could work, please comment below or email us at admin@potsuk.org.
We hope to see some of you there! ☕💜
#Edinburgh #PoTSCommunity #PoTSSupport #LivingWithPoTS #InvisibleIllness #CommunityMatters
Congratulations to Dr Lesley Kavi on 10 years as Chair of PoTS UK! 💜
Today we’re celebrating an incredible milestone and saying a huge thank you to Dr Lesley Kavi, who has been Chair of PoTS UK for the past 10 years.
Lesley has been dedicated to PoTS UK as a trustee for over ...15 years, helping to transform awareness, deliver education and offer support to people living with PoTS.
After studying medicine in Glasgow, Lesley worked as a GP and university lecturer before retiring in 2022 to dedicate even more time to the charity. Throughout her career, she has been passionate about improving the understanding of PoTS among healthcare professionals and making life better for patients.
Lesley co-edited the UK’s first medical textbook on PoTS and continues to play a leading role in developing national guidance on PoTS. She regularly teaches healthcare professionals from a wide range of backgrounds, helping to improve diagnosis and care across the UK.
Lesley’s vision is simple but powerful: that every healthcare professional recognises PoTS and has the knowledge and confidence to diagnose and manage it effectively.
Thank you, Lesley, for your unwavering commitment, leadership and compassion over the past decade. Your dedication has made a lasting difference to the lives of so many people in the PoTS community.
Please join us in congratulating Lesley on this remarkable milestone!
#ThankYou #Dedication #Congratulations #PoTS #PoTSCommunity
Congratulations to Dr Lesley Kavi on 10 years as Chair of PoTS UK!
Today we're celebrating an incredible milestone and saying a huge thank you to Dr Lesley Kavi, who has been Chair of PoTS UK for the past 10 years.
Lesley has been dedicated to PoTS UK as a trustee for over ...15 years, helping to transform awareness, deliver education and offer support to people living with PoTS.
After studying medicine in Glasgow, Lesley worked as a GP and university lecturer before retiring in 2022 to dedicate even more time to the charity. Throughout her career, she has been passionate about improving the understanding of PoTS among healthcare professionals and making life better for patients.
Lesley co-edited the UK's first medical textbook on PoTS and continues to play a leading role in developing national guidance on PoTS. She regularly teaches healthcare professionals from a wide range of backgrounds, helping to improve diagnosis and care across the UK.
Lesley's vision is simple but powerful: that every healthcare professional recognises PoTS and has the knowledge and confidence to diagnose and manage it effectively.
Thank you, Lesley, for your unwavering commitment, leadership and compassion over the past decade. Your dedication has made a lasting difference to the lives of so many people in the PoTS community.
Please join us in congratulating Lesley on this remarkable milestone!
#ThankYou #Dedication #Congratulations
Join us for a PoTS UK In-Person Peer Support & Practical Advice Event
🗓️ Sunday 15th November
🕐 1:00pm – 5:30pm
📍 Stratford-upon-Avon
💷 £5 per person (includes a hot drink and cake)
Join us for an afternoon of chat, peer support, and education in a... relaxed and welcoming environment.
Whether you're newly diagnosed or have been living with PoTS for many years, this event is a chance to connect with others who truly understand.
During the afternoon you'll have the opportunity to:
💜 Hear from healthcare professionals
💜 Listen to people living with PoTS as they share their experiences and top tips
💜 Ask questions and learn from others
💜 Meet others in the PoTS community in an informal, supportive setting
You're welcome to bring one family member or friend, but everyone attending will need their own ticket so we can ensure there is enough space for everyone.
Your ticket includes tea, coffee, soft drinks, and afternoon treats. We've subsidised the ticket price to help make the event as accessible as possible. If the cost would prevent you from attending, please get in touch with us at admin@potsuk.org
Please note:
• This event is open to those aged 16+
• Healthcare professionals will not be able to provide individual medical advice but will be happy to offer general information and signposting.
🎟️ Spaces are limited, so register now to avoid missing out:
https://potsmeetup.eventbrite.co.uk
We can't wait to meet you!
#PoTSPeerSupport #PoTSCommunity #PatientSupport #CommunitySupport
Join a PoTS UK Online Peer Support Group this week!
Living with PoTS can feel isolating, but you don't have to face it alone. Our online peer support groups provide a welcoming space to connect with others who understand, share experiences, and offer encouragement.
📅 This... week's sessions (w/c 6th July):
💜 Monday 6th July – 7:00pm
🧠 Neurodivergent Community
💜 Tuesday 7th July – 1:00pm
☀️ Afternoon Session
💜 Tuesday 7th July – 7:00pm
🌱 Newly Diagnosed / Awaiting Diagnosis
💜 Wednesday 8th July – 7:00pm
🤝 Open to all over 18
💜 Thursday 9th July – 7:00pm
🏴 Northern Ireland, Scotland & Wales
Everyone is welcome in a friendly, supportive environment.
Register here: https://www.potsuk.org/pots-uk-online-peer-support-groups/
We look forward to seeing you!
#PoTSPeerSupport #Neurodivergent #NewlyDiagnosed
As we start planning for PoTS Awareness Month, we'd love to hear from you.
What content would you like to see on our social media channels? Whether you're living with PoTS, supporting someone who is, or simply want to learn more, your ideas can help us create meaningful, engaging... content that raises awareness and improves understanding.
Some suggestions we've already received include:
✨ "Two Faces of PoTS" – comparing a good day and a bad day to highlight the reality of living with an invisible illness
📸 Sharing a "normal-looking" photo with text describing the symptoms that aren't visible
🎥 "I was at my worst here" posts, showing photos from significant moments alongside the reality of what was happening behind the scenes
💧 Behind-the-scenes content showing what it takes to manage PoTS, including electrolytes, compression garments, medication, pacing and rest
👣 Day-in-the-life videos or social media takeovers from people living with PoTS
🧦 GRWM (Get Ready With Me) videos featuring daily management routines
🎒 "What's in my bag?" posts showcasing the items people use to help manage their symptoms
❓ Interactive content such as daily Q&As, polls, or a "31 Questions About PoTS" series exploring different aspects of life with the condition
💭 Content explaining the visible and invisible sides of illness, including the contrast between how someone feels and how they appear
What would you find most helpful, relatable, or engaging?
💬 Share your ideas in the comments below – we'd love to hear from you!
#PoTSAwarenessMonth #LivingWithPoTS #InvisibleIllness #Dysautonomia #PoTSAwareness
