PoTS UK

1/5 Happy 7th 🌟#PoTSAwarenessDay🌟 Postural Tachycardia Syndrome (PoTS) can be a life altering and debilitating health condition. #PoTS is an abnormality of the autonomic nervous system, which controls all bodily functions that we don’t have to think about. Individuals experience orthostatic intolerance, which means that they mostly experience symptoms when in an upright position. The majority of people with PoTS also have other related medical conditions such as hypermobile Ehlers-Danlos Syndrome, allergies, Long Covid and ME/CFS- all of which can make symptoms worse. If you are new here please take the time to view the image thread below to learn some basics about PoTS: 🟣 Symptoms 🟣 Tests/Investigations/Diagnosis 🟣 Treatment- lifestyle changes & medication View our website to learn more about symptoms: potsuk.org/about-pots/sympto… #MedTwitter #TeamGP #ChronicIllness #LongCovid #InvisibleIllness #MECFS #EDS #MCAS @DrSdeG @elisaperego78 @DrSarahJarvis @mermhart @cpgale3 @LongCovidAdvoc @LC_Physio @MEAssociation

✨ 31 days of PoTS ✨ DAY 31- KEEP THE CONVERSATION GOING We’ve reached the end of 31 Days of #PoTS- but awareness doesn’t end today! What will you take away from this month? Share: ▪ Your favourite challenge ▪ Something you’ve learned ▪ A story that stayed with you ▪ Why raising awareness matters to you ▪ Why you’ll keep talking about PoTS Thank you for sharing your stories, raising awareness and helping others feel less alone. Keep talking. Keep sharing. Keep raising awareness. 💜 Tag @UKPoTS and use #PoTSAwarenessMonth #LifeWithPoTS

🗞️The @bmj_latest 'What Your Patient is Thinking.' 👉Living with #PoTS during weather changes👈 'Practical adjustments and understanding can help people with PoTS manage their symptoms during periods of extreme heat' writes Jennifer. bmj.com/content/395/bmj-2026… #MedTwitter #TeamGP #PoTSAwarenessMonth #PoTSAwareness

✨ 31 days of PoTS ✨ DAY 30- HOPE What gives you hope? Share something that helps you look forward. It could be: ▪ Someone who supports you ▪ A positive moment ▪ Treatment ▪ Your community ▪ An achievement ▪ A future goal ▪ Something you’re excited about What keeps you going? Tag @UKPoTS and use #PoTSAwarenessMonth #LifeWithPoTS

💻 PoTS UK Volunteer Webinar: PoTS and Friends & Family Living with #PoTS can affect not only the person diagnosed, but also the people around them. Join us for our PoTS and Friends & Family webinar to explore the impact PoTS can have on relationships and how friends and family can offer understanding and support. 📆 Saturday 31st October ⏰ 1pm 🔗 Register for free: us02web.zoom.us/.../reg.../W… Whether you live with PoTS or want to better support someone who does, we’d love you to join us! Please share to help spread the word. #PoTSAwarenessMonth #PoTSWebinars #FriendsAndFamily #PoTSSupport

💜 Small contributions can make a BIG difference! 💜 We’ve recently added a new way to donate to PoTS UK, making it easier than ever to support our work with a regular monthly donation. ☕️ Just £2.50 a month, less than the price of a coffee, could help us make a real difference to people living with PoTS. Every regular donation helps us continue our work supporting the PoTS community and raising awareness. 💜 Donate today - whether it’s a one-off or a monthly donation, every contribution makes a difference!: potsuk.org/donate/ 🛍️ Want to support PoTS UK for FREE? You can do that too! When you shop online through Give as you LiveOnline, over 6,000 retailers, including John Lewis & Partners, Expedia and Marks & Spencer, can turn a percentage of your spending into a donation for PoTS UK, at no extra cost to you! It’s a simple way to support our charity while doing your usual online shopping. Every little helps! 🛒 Find out how to get started: potsuk.org/give-as-you-live/ Thank you for being part of our community and helping us make a difference. #SupportPoTSUK #Fundraising #GiveAsYouLive #LivingWithPoTS #DonateNow

We had an amazing number of buildings and landmarks lighting up in purple on Sunday for #PoTSAwarenessDay, helping shine a light on #PoTS across the UK! A huge thank you to everyone who made this possible, and to all of you who took the time to visit the light-ups, take photos and share them with us. Your support means so much and helps us raise awareness of PoTS. 📷 Help us showcase this year's Light Up Purple campaign! We'd love to bring together photos of all the amazing buildings and landmarks that lit up purple this year. If you took a photo that you haven't yet shared on social media or sent to us, we'd love to see it! 📩 Please email your photos to [email protected] by this weekend so we can celebrate and showcase the incredible support we've received. Thank you for helping us make PoTS visible and raise awareness of a condition that affects so many lives. #PoTSAwarenessMonth #RaisingAwarenessOfPoTS #LightUpPurple

✨ 31 days of PoTS ✨ DAY 29- A PoTS FACT Let’s spread some facts! What’s ONE thing about #PoTS you think more people should know? It could be something about: ▪ Symptoms ▪ Diagnosis ▪ Who it affects ▪ Daily life ▪ Treatment ▪ The reality of living with PoTS Share your fact and help raise awareness. Tag @UKPoTS and use #PoTSAwarenessMonth #LifeWithPoTS

✨ 31 days of PoTS ✨ DAY 28- MY GOAL Living with #PoTS doesn’t mean giving up on your goals. What are you working towards? It could be: ▪ A big life goal ▪ Returning to a hobby ▪ Going somewhere new ▪ Getting through an upcoming challenge ▪ Simply having a better day Big or small, tell us about your goal. Tag @UKPoTS and use #PoTSAwarenessMonth #LifeWithPoTS

PoTS UK were privileged to attend the very first masterclass of the new British Autonomic Society! britishautonomicsociety.co.u… Pictured from left to right at the table: Chair of PoTS UK, Dr Lesley Kavi, Dr. Valeria Iodice, Dr. Boon Lim, and Dr. Helen Eftekhari. All four were speakers yesterday, with Dr. Valeria Iodice leading as President of the British Autonomic Society. It was a fascinating day covering clinical services, new research, and the vital role of patient support organisations. #BritishAutonomicSociety #PoTSResearch #AutonomicConditions #PoTS

💜 A huge thank you to Covesea Lighthouse! 💜 Following storm damage to their lighting, we’re delighted to hear that the issue has now been fixed and that Covesea Lighthouse will remain illuminated in purple to support #PoTSAwarenessMonth until and including 31st October! 💜 We’re so grateful to everyone at Covesea Lighthouse & Royal Navy and Royal Air Force Heritage Centre for their support and commitment to raising awareness of #PoTS. facebook.com/LossieLighthous… Fancy a visit? If you’re local and would like to see the lighthouse illuminated in purple, we’d love to see your photos! Please email your photos to [email protected] to help spread awareness. Every light-up helps shine a spotlight on a condition that is often misunderstood and invisible to others. Thank you for helping us make PoTS visible! #PoTSAwarenessDay #LightUpForPoTS #RaisingAwarenessOfPoTS

💜 PoTS AWARENESS MONTH: FINAL WEEK! 💜 We’re heading into the final week of #PoTSAwarenessMonth, and there’s still plenty happening! From online peer support groups to yoga, relaxation sessions and our final volunteer-led webinar, there are lots of opportunities to connect, learn and feel supported. ONLINE PEER SUPPORT GROUPS 📆 Tuesday 27 October, 7pm Online Peer Support Group, open to all over 18 📆 Wednesday 28 October, 7pm Newly Diagnosed/Awaiting Diagnosis Group 2 🔗 Find out more and register: potsuk.org/pots-uk-online-pe… 🧘 FINAL BREATHWORK SESSION Join Victoria for the final session of her 4-Week Journey to Reconnect with Your Nervous System. 📆 Wednesday 28 October, 8.30am 🔗 Register here: us02web.zoom.us/.../reg.../W… 🧘‍♀️ FINAL WEEK OF PoTS YOGA There’s still time to join Laurie from LEMon Yoga for the final week of our Awareness Month yoga sessions! Join the Facebook group here: facebook.com/groups/25155568… 💻 OUR FINAL VOLUNTEER-LED WEBINAR Finish the month by joining us for PoTS and Friends and Family, exploring the experiences of those who support someone living with PoTS. 📆 Saturday 31 October, 1pm 🔗 Register here: us02web.zoom.us/.../reg.../W… We hope you’ll join us for as many activities as you can! Let’s make this final week count, finish PoTS Awareness Month on a high, and keep raising awareness and understanding of #PoTS. Thank you to everyone who has taken part, shared their stories and supported us throughout the month. Together, we can make a difference! #PoTSAwarenessDay #PoTSYoga #PoTSPeerSupport #PoTSWebinar

✨ 31 days of PoTS ✨ DAY 27- HOW YOU CAN HELP What’s one simple thing other people can do to support someone with #PoTS? Think: ▪ Friends ▪ Family ▪ Employers ▪ Teachers ▪ Colleagues ▪ Healthcare professionals What small change can make a big difference? Share your answer and help others understand how they can support people with PoTS. Tag @UKPoTS and use #PoTSAwarenessMonth #LifeWithPoTS

✨ 31 days of PoTS ✨ DAY 26- MY FAVOURITE PoTS RESOURCE What’s helped you understand or manage #PoTS? Share a resource that’s made a difference to you. It could be: ▪ A PoTS UK resource ▪ Webinar ▪ Leaflet ▪ Support group ▪ Video ▪ Book ▪ Another trusted source of information What would you recommend to someone looking for reliable PoTS information? Tag @UKPoTS and use #PoTSAwarenessMonth #LifeWithPoTS

Thank you to @O2GuildhallS Southampton for lighting up tonight, raising awareness of #PoTS on this #PoTSAwarenessDay! 🫶💜 Please learn more here: potsuk.org #LightUpForPoTS

Thank you @MbroCouncil for lighting up this evening for #PoTSAwarenessDay! 🫶💜 #PoTS potsuk.org

Thank you to @ParadiseBham for lighting up in purple this evening for #PoTSAwarenessDay 🫶💜 #PoTS potsuk.org