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.
My name is Phoebe, and I’m 25 years old. I was diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTS) in March 2026 after three years of...
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 ...
Do you live in Scotland? 🏴
Please consider contacting your Member of the Scottish Parliament (MSP) and ask them to support people living with PoTS.
We’ve created a simple email template to make it easy for you to contact your MSP and encourage them to... attend the PoTS UK drop-in session at Holyrood on 30th September.
Your voice can help us raise awareness of PoTS and highlight the need for better support and care across Scotland.
👉 Email your MSP today:
https://potsuk.eaction.org.uk/holyrooddropinsession
Thank you for helping us make sure PoTS is heard in the Scottish Parliament.
#Scotland #Holyrood #RaisingAwarenessOfPoTS #LivingWithPoTS #PosturalTachycardiaSyndrome
🎮💜 REMINDER: Calling All Twitch Streamers! 💜🎮
Are you a Twitch streamer looking to make a difference?
On 17th October, PoTS UK is planning a 12-hour charity Twitch event, and we’re looking for 12 streamers to each take over for one hour to help raise awareness and ...funds for people living with Postural Tachycardia Syndrome (PoTS).
Whether you stream gaming, art, music, crafting, speedruns, Just Chatting, or something completely different, we’d love to hear from you! No matter the size of your community, your support can make a real impact. 💜
📧 Interested in getting involved? Email admin@potsuk.org for more information and to register your interest.
📅 We’d love to hear from you by Friday 31st July so we can start planning the event very soon!
💜 Know a Twitch streamer who might be interested? Tag them in the comments or share this post to help us spread the word!
#Twitch #TwitchStreamer #CharityStream #GamingForGood #StreamerCommunity
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
📅 Save the Date!
💜 PoTS UK In-Person Peer Support & Practical Advice Event
🗓️ Sunday 15th November
🕐 1:00pm – 5:30pm
📍 Stratford-upon-Avon, Warwickshire
💷 £5 per person (includes a hot drink and cake!)
Join us for a relaxed afternoon of ...peer support, practical advice and inspiring talks from healthcare professionals and people living with PoTS.
Whether you’re newly diagnosed or have been managing PoTS for years, this is a welcoming opportunity to:
✨ Meet others who truly understand
🎤 Hear from Dr Lesley Kavi and Dr Helen Eftekhari, followed by a Q&A
💜 Listen to personal PoTS stories and practical management tips
☕ Enjoy refreshments and friendly conversation
The event is open to anyone aged 16+, and you’re welcome to bring one family member or friend (each attendee will need their own ticket).
🎟️ Venue details and ticket booking information will be shared soon – keep an eye on our social media!
#PeerSupport #PatientSupport #CommunityMatters #SocialTime #ChanceToChat
Huge congratulations to Thea and her cousin, who have successfully completed the Three Peaks Challenge, climbing the UK’s three highest mountains, Ben Nevis, Scafell Pike and Snowdon, in just over an incredible 23 hours!
Not only did they take on this amazing challenge, but they have ...also raised a fantastic £1,428 for PoTS UK. 💜
Thea chose to support PoTS UK after seeing first-hand how PoTS affects her best friend, Freya, on a daily basis. Their friendship and determination to make a difference is truly inspiring.
Freya shared:
“Thea doing this challenge to raise money for PoTS UK means so much to me as when I was getting ill and the doctors had no answers, the only place with information to help was PoTS UK.”
Thea’s motivation shines through in her own words:
“I am so immensely proud of Freya for continuing to fight every day, and I want to do everything I can to help make her life a little easier.”
To read Freya’s full message and learn more about their incredible fundraising journey, visit Thea’s fundraising page:
https://www.justgiving.com/page/thea-skeels-3peaks
Thank you, Thea and your cousin, for your incredible effort, generosity and support of the PoTS community. We are so grateful 💜
#ThreePeaksChallenge #FundraisingHeroes #PoTS #PoTSAwareness #ThankYou
PoTS UK Charity Places - 2027 Running Events
PoTS UK is planning to apply for charity places in the following 2027 events:
🏃 Great Manchester Run - 23rd May 2027
🏃 Great Bristol 10k & Half Marathon - 9th May 2027
🏃 Great Birmingham Run - 2nd May 2027
...We’d love to hear which event you’d be most interested in running for PoTS UK.
By taking part, you’ll help raise awareness of PoTS and support the thousands of people affected by the condition across the UK.
👉 Fundraising Commitment:
We kindly ask each participant to commit to raising a minimum of £500.
As a thank you, you’ll receive a PoTS UK fundraising pack packed with tips, resources, and support to help you reach your target. Every penny you raise will go directly towards supporting PoTS UK’s vital work.
Please let us know which event you would be interested in taking part in by completing this survey by Friday 17th July:
https://www.surveymonkey.com/r/WMNNP8F
#RunningForPoTS #RaisingAwarenessOfPoTS #CharityRunner
⚠️ Incorrect information on the internet regarding salt/sodium intake - please be aware ⚠️
We’ve recently been made aware of incorrect information circulating online about recommended sodium/salt intake for people with PoTS.
A misprint in a journal article has led to ...some websites quoting incorrect figures, highlighting the importance of understanding the difference between salt and sodium - terms that are often used interchangeably but represent very different quantities.
🔹 10g of salt is not the same as 10g of sodium
🔹 Recommendations for salt and fluid intake should always be individualised and guided by your healthcare professional
PoTS UK has contacted the websites we are aware of that are sharing the incorrect information, but we may not have identified them all.
Please take a moment to read our latest news article to learn more and help ensure you’re accessing accurate information:
🔗 https://www.potsuk.org/incorrect-information-on-internet-regarding-salt-sodium-intake-please-be-aware/
Thank you to the individual who brought this important issue to our attention.
#HealthInformation #PatientSafety #PoTS #PosturalTachycardiaSyndrome
Have you downloaded your PoTS Passport yet?
At PoTS UK, we know that many people living with PoTS can face challenges in healthcare settings due to limited awareness and understanding of the condition and its impact on everyday life.
The PoTS Passport has been developed to help ...patients receive safe, informed and appropriate care by clearly communicating their baseline symptoms, physiological needs and any condition-specific adaptations that may be required alongside treatment for other health issues.
📄 Download the PoTS Passport here: https://www.potsuk.org/managingpots/pots-passport/
We’d love to hear your feedback. Whether you’re a person living with PoTS, a family member, carer or healthcare professional, your views are important to us.
Is there anything missing? Is there something that could be improved? What has your experience been of using the Passport?
Please share your thoughts by completing our short survey:
📝 https://www.surveymonkey.com/r/9PD7YXJ
Your feedback will help us continue to improve this resource and ensure it meets the needs of both patients and healthcare professionals.
#PatientSafety #HealthcareAwareness #PatientVoice #LivingWithPoTS #PoTSPassport
PoTS UK Masterclass 2026 – Catch-Up Content Now Available
Did your healthcare professional miss our PoTS UK Masterclass 2026 – “Back to Basics and New Insights” in May? The recordings are now available to purchase.
This healthcare professional masterclass was designed to ...help those working in primary and secondary care better understand PoTS, covering the fundamentals of the condition and providing practical insights to help support people living with PoTS.
Whether your healthcare provider is new to PoTS or looking for a refresher, this beginner-friendly session offers valuable information to improve understanding of the condition and the challenges patients may face.
While the recordings are primarily intended for healthcare professionals, patients are also welcome to purchase access if they wish to learn more about PoTS.
If you have a supportive GP, consultant, nurse, physiotherapist or other healthcare professional involved in your care, please consider sharing this opportunity with them. Greater awareness and understanding of PoTS can make a real difference to the patient experience.
📩 Recordings will be emailed following purchase.
🔗 Purchase here: https://www.potsuk.org/product/pots-uk-masterclass-2026-catch-up-content/
As a small charity, we kindly ask that recordings and resources are not shared. By purchasing these materials, you are helping us to continue our work and support future educational projects for the PoTS community. Thank you for your understanding and support.
Please share with your healthcare professionals and help us improve understanding of PoTS. 💜
#HealthcareProfessional #MedicalEducation #PrimaryCare #SecondaryCare #PosturalTachycardiaSyndrome
