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.
Hello, my name is Amber, and I am 21 soon to be 22. I’m from Canada, I developed PoTS at 11 years old but was misdiagnosed numerous times. It...
My name is Sarah. I am 32 years old, and was diagnosed with PoTS at 30 years old. About 3 months after having a covid infection, I became very sick...
Hi I’m Natalie. I’ve been showing symptoms of PoTS on and off since my teenage years, going dizzy on standing, feeling faint and having...
My symptoms first appeared at 16. I remember this as I experienced a scary period of prolonged tachycardia, that led to my first hospital visit....
Volunteers' Week 2026 💜
This week, we're celebrating our incredible volunteers who give their time, energy and expertise to support PoTS UK.
From helping at events and supporting our Online Peer Support Groups to raising awareness and sharing their lived experiences, ...they make a real difference every day.
Quite simply, we couldn't do what we do without you!
Thank you to each and every one of our amazing volunteers. 💜
#VolunteersWeek2026 #ThankYouVolunteers #PoTSUKVolunteers
🎉 Huge congratulations to our incredible runners who took on their events yesterday! 🎉
We are so grateful that you chose to support PoTS UK and help raise awareness of PoTS. Together, you have raised nearly £6,000 - an amazing achievement that will help us continue our work ...supporting the PoTS community.
A huge thank you to everyone who ran, donated, cheered from the sidelines, and shared their fundraising journeys. Your support makes a real difference.
We hope you're all putting your feet up and giving those hard-working legs a well-earned rest today!
Great Manchester Run Green Park Reading 10K & Family Runs
#Fundraising #ThankYou #RunningForPoTS #RaisingAwarenessOfPoTS #CharityChallenge #MakingADifference #TeamPoTSUK 🏃♀️🏃♂️
International Mast Cell Disease Awareness Month is here!
This June, we’re joining the conversation to help shine a light on Mast Cell Activation Syndrome (MCAS) and other mast cell diseases. These complex conditions can affect multiple body systems, are often misunderstood, and can be ...challenging to diagnose.
Together, we can help more people recognise the signs, access appropriate care, and feel less alone.
Find out why International Mast Cell Disease Awareness Month matters:
https://www.mastcellaction.org/why-international-mast-cell-disease-awareness-month-matters-1
We’re proud to support the work of Mast Cell Action and stand alongside the mast cell disease community this June. 💜
#MCASAwarenss #MastCellDiseaseAwarenessMonth #ChronicIllness #InvisibleIllness #AwarenessMatters #DysautonomiaAwareness #LivingWithPoTS
Good luck to our incredible PoTS UK runners tomorrow!
We want to wish the very best of luck to Steve, Liv, Louise, Scott and Jess, who are taking on the Great Manchester Run Half Marathon, and to Tom, who is running the Green Park Reading 10K & Family Runs support of PoTS UK for ...Annabelle.
Every one of them is running for PoTS UK for their own personal reasons, and we are so grateful for their dedication, determination, and support.
Please take a moment to read their stories and show your support by visiting their fundraising pages:
💜 Jess: https://www.justgiving.com/page/jessica-naughton-26
💜 Steve: https://ajbellgreatmanchesterrun2026.enthuse.com/pf/steve-sheridan
💜 Scott: https://www.justgiving.com/page/scott-whibley-2
💜 Louise: https://www.justgiving.com/page/louise-wilcock
💜 Liv: https://www.justgiving.com/page/liv-farrar04
💜 Tom: https://www.justgiving.com/page/toms10kforpotsuk
If you live nearby, please go along and cheer them on! Two of our lovely PoTS UK volunteers will also be there supporting our Manchester runners and would love some extra encouragement from the community.
We’ll be cheering every mile from afar, good luck everyone, you’ve got this!
#FundraisingHeroes #GreatManchesterHalf #ReadingGreenPark10K #RunningForPoTS #TeamPoTSUK
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
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 #RaiseAwareness #PatientSupport
We’re so proud to share that PoTS UK volunteer David Rodgers will be showcasing a stunning new collection at this year’s Bucks Art Weeks.
David, a talented craftsman and member of the Buckinghamshire Craft Guild and Society of Designer Craftsmen, continues to create exceptional work ...while living with PoTS, proving that physical limitations do not define creativity.
This year is even more special, as David will also be celebrating a milestone moment alongside his 13-year-old daughter, Florence, who is making her own debut at the festival.
A wonderful story of creativity, resilience and family! We hope visitors to Bucks Art Weeks will stop by and show their support.
Please join us in wishing David and Florence the very best of luck! 💜
#BucksArtWeeks #LivingWithPoTS #PoTSAwareness
Two Generations of Creativity: Local wood turner living with debilitating health conditions shares spotlight with daughter at Bucks Art Weeks
www.bucksherald.co.ukIt was great to hear PoTS UK volunteer Maisie on BBC Somerset Radio this morning, sharing her experience of living with PoTS and how she copes during hot weather.
Heat can make PoTS symptoms more challenging, so hearing real-life tips and experiences can be so helpful for our community. ...Thank you, Maisie, for helping raise awareness and sharing your story. 💜
#Heatwave #ChronicIllness #InvisibleIllness #LivingWithPoTS #PoTSAwareness
Research Opportunity - Share Your Experience of Getting a PoTS Diagnosis
Fatima Jamoom, a Health Sciences student at The Open University, is conducting a research study exploring the reasons behind delayed diagnosis in PoTS.
The study will look at experiences such as:
🔹 ...Healthcare experiences
🔹 Misdiagnosis
🔹 Access to specialist services
🔹 Average time to diagnosis for people with PoTS in the UK
📝 What’s involved?
An anonymous online survey taking around 10 minutes to complete.
✅ Who can take part?
• Aged 18 or over
• Have a formal diagnosis of PoTS
🔗 Take part here:
https://forms.gle/EsxdgE26pGZg9rtb8
Thank you for helping improve understanding of the diagnostic journey for people living with PoTS. 💜
#LivingWithPoTS #ResearchStudy #PoTSAwareness #Dysautonomia #ChronicIllness #HealthcareResearch #PatientVoice #PoTSCommunity
