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 Lexi, I am 14 years old and I live in the UK. I was officially diagnosed with PoTS a month ago, but looking back, I realise I have been...
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...
A quick guide for uni prep with PoTS 💜
Thank you Katie @thechronicillnesshub for sharing her tips on attending university with PoTS. Today she shares about DSA (Disabled Students Allowance) and Learning Support.
She’ll also be sharing more in upcoming videos about :
- ...Accommodation
- Medication
- Telling others
- Freshers Week
- Preparing for a flare
You can find further information about managing PoTS and Education on the PoTS UK website:
🔗 https://www.potsuk.org/managingpots/attending-university-with-pots/
#PoTS #ManagingPoTS #UniversityWithPoTS #DSA #LearningSupport
Shop Update 🛒
Due to staff annual leave, orders placed through our shop from now will be posted on Tuesday 1st September.
Thank you for your patience and understanding 💜
Could you help PoTS UK for just £2.50 a month?
A small regular donation can help us continue providing support, information, education and awareness for people living with PoTS.
Every donation, big or small, makes a difference. Together, we can do more.
👉 Become a ...regular donor via https://www.justgiving.com/charity/potsuk
#DonateToPoTSUK #RegularGiving #SupportingThoseWithPoTS
Have you used our PoTS Passport?
The PoTS Passport was developed to help people with PoTS communicate important information about their condition, symptoms and individual needs to healthcare professionals. It can be useful for GP appointments, hospital stays, outpatient appointments, ...dental treatment and other healthcare settings.
If you’ve used the PoTS Passport, we’d really love to hear from you!
We’re meeting in mid-September to review the Passport, and your feedback will be incredibly helpful in deciding what works well, what could be improved and whether anything is missing.
📣 Have you used it? Tell us about your experience!
👉 Complete our short feedback survey: https://www.surveymonkey.com/r/9PD7YXJ
📄 Haven’t seen the PoTS Passport yet? You can find out more and download it here: https://www.potsuk.org/managingpots/pots-passport/
Your experience could help us make the Passport as useful as possible for the PoTS community. Thank you for helping us improve it!
#LivingWithPoTS #PatientVoice #PatientSafety #HealthcareAwareness #PoTSPassport
Join us in Stratford upon Avon!
Please join us for our PoTS UK In Person Peer Support and Practical Advice event.
This is a relaxed and informal afternoon focused on peer support, connection and practical advice. Come along to chat with people who truly understand life with PoTS, ...share experiences, ask questions and hear from both people living with PoTS and healthcare professionals.
Whether you’re newly diagnosed, awaiting diagnosis or have been living with PoTS for many years, everyone is welcome.
📍 Rosebird Community Hall, Stratford-upon-Avon, Warwickshire
📅 Sunday 15 November 2026
⏰ 1pm–5:30pm
You can bring a family member or friend, but everyone attending must have their own ticket. Due to limited space, we ask that you bring no more than one guest unless essential.
☕ Tea, coffee, soft drinks and afternoon treats are included!
We’ve kept ticket prices as low as possible to make the event accessible. If you’d love to attend but the cost is a barrier, please get in touch with us.
🎟️ Register here: https://potsmeetup.eventbrite.co.uk
We hope to see you there!
#PeerSupport #PoTSCommunity #PoTSMeetUp #PoTSUK
RUN FOR PoTS UK IN 2027! 🏃🏾♂️
We have one charity place available for each of these fantastic events:
🏃 Run South London Half Marathon – 14th March 2027
🏃 Great Birmingham Run Half Marathon – 2nd May 2027
🏃 Great Birmingham Run 10k – 2nd May ...2027
🏃 Great Manchester Run 10k – 23rd May 2027
Want to take on a challenge while helping raise awareness of PoTS?
Complete the form below for your chance to run for PoTS UK and help us support the thousands of people affected by PoTS across the UK.
🎯 Fundraising commitment:
We kindly ask each participant to commit to raising a minimum of £500.
Every penny you raise will go directly towards supporting PoTS UK’s vital work. 🙌
⏰ Applications close at midday on Monday 31st August.
👉 Apply here: https://www.surveymonkey.com/r/W6VTSQZ
Could you take on the challenge for PoTS UK?
#RunForPoTS #GreatManchesterRun #GreatBirminghamRun #RunSouthLondon #UKCCharity
🎓 Starting or returning to university with PoTS?
Whether you’re preparing for your first term, moving away from home for the first time, or returning to your studies, living with PoTS can bring unique challenges. The good news is that you don’t have to face them alone.
Join... our PoTS & University Online Peer Support Group on Monday 10th August at 7:00pm and connect with others who understand what it’s like to balance university life with PoTS.
This friendly online session is a great opportunity to talk about:
💜 Moving away from home for the first time
🏠 Student accommodation
📚 Reasonable adjustments and disability support at university
💷 Benefits and financial support you may be entitled to
🤝 Managing studies, making friends and looking after your health
Whether you have questions, want to share your own experiences, or simply listen to others, you’ll be warmly welcomed.
📅 Monday 10 August
🕖 7:00pm
💻 Online
🎟️ Book your free place here:
https://www.eventbrite.co.uk/e/pots-and-university-pots-uk-online-peer-support-group-tickets-1991911511953?aff=oddtdtcreator
We look forward to seeing you there!
#PosturalTachycardiaSyndrome #University #StudentLife #ReasonableAdjustments #StudentSupport
Help Us Turn the UK Purple for PoTS Awareness Day! 💜
Every year on 25 October, we celebrate PoTS Awareness Day by encouraging landmarks and buildings across the UK to Light Up in Purple.
Since our first campaign in 2019, more and more iconic buildings have taken part and we’d... love to make this year’s campaign our biggest yet!
✨ You can help by contacting local landmarks, businesses or venues and asking them to light up purple on 25 October.
Find everything you need, including email templates and guidance:
https://www.potsuk.org/light-up-for-pots-2025/
See which buildings have already confirmed they’ll be taking part:
📍 https://www.potsuk.org/buildings-lighting-up-by-region/
Every building that lights up in purple helps to:
💜 Raise awareness of PoTS.
💜 Encourage earlier diagnosis and better support.
💜 Show everyone living with PoTS that they are seen, supported and not alone.
Together, let’s turn the UK purple this PoTS Awareness Day!
#PoTSAwarenessDay #LightUpForPoTS #TurnTheUKPurple #PosturalTachycardiaSyndrome #PoTS
Ask your MP to sign the PoTS Early Day Motion!
Please email your MP and ask them to sign the PoTS Early Day Motion, tabled by @catsmithmp
We want as many MPs as possible to support the motion and call for action by writing to their Integrated Care Board or Health Board.
...⏱️ It takes less than a minute and really can make a massive difference!
By playing your part, you can help us drive positive change for people living with PoTS. 💜
👉 Take action today: https://potsuk.eaction.org.uk/potsedm
#EarlyDayMotion #RaisingAwarenessOfPoTS #PositiveChange #PosturalTachycardiaSyndrome #UKPolitics
