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PoTS UK - Charity 1159813

@potsuk

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Educates and supports patients, family, friends and medical professionals within the UK about Postural Tachycardia Syndrome (PoTS) #TakeAStandForPoTS

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Great day today, from @manchesterdeafcentre social coffee morning to volunteering with @medicaldetectiondogs northern team, thanks to this boy for enabling me to do it. Also great it was up north and in a place that’s a Philly fav.
Spreading awareness for both @medicaldetectiondogs and @dogsforautism as well. Also as it’s pots awareness day on Sunday it’s especially promoted @potsuk and during invisible disability week. It’s very important just coz it’s not visible doesn’t mean it’s not there and normally it is visible just not in a way you expect.
I wouldn’t have dreamed of this and the help he gives me in public by breaking the ice and knowing a script almost and having a bank that you know who to ask if you don’t know is so precious but what epitome of what you don’t see
Eg autism, pots or my vestibular episodes. My tube which are more often than not hidden by clothes as people keep saying you look well, normally you just end up knowing how to fake it and smile and nod. Whatever it is until you try you don’t know and try if it doesn’t work we find a way is how I was brought up and it doesn’t define you!
#assistancedog #dogs #servicedogs #pots #labrador rescue dog swiftie hidden disability chronic illness vestibular disorder working dog dog training

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Absolutely in awe of how much support we got on Saturday for @potsuk !🥹 THANK YOU to everyone who took part and contributed 👏🏻💜 #pots #potsie #charityevent #fundraising #smallstreamer

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The rarely talked about side of EDS-Craniocervical instability 🦓

With having EDS, you can develop CCI without having trauma (car accident etc) happen, because EDS causes our ligaments to be lax and not support the skull properly or limit movement to a safe amount, so the structures become unstable. CCI can range from mild to severe, catching and getting treatment early is vital.
Please share this with your EDS friends, you could save them this experience 🙏🏼❤️

It’s worth noting that CCI patients who have EDS can have normal looking suspine scans, it’s important you get an upright MRI for diagnosis because it’s often when the weight of the skull is on the spine or when we move our head that the true extent of our condition can be seen.

So how did I get to this point?

Sadly mine wasn’t caught early I had struggled with symptoms/neck pain for a few years but we didn’t know what it was despite me repeatedly trying to seek medical help but that’s a story for another time, however all the while further damage was being done as time went by without treatment so by the time I was officially diagnosed my condition was so severe that my specialist doctors advised me that urgent surgery is now my only option left to avoid irreversible damage. Which has left me in this situation I am in right now trying to fundraise for my surgery urgently, a situation I wouldn’t want anyone to have to go through.

In 2023 my condition drastically deteriorated and has continued to decline rapidly, End of last year I became fully bed bound from my CCI, living my life on the horizontal. This year has been the fastest deterioration yet with a huge rise in symptom severity and frequency but also new very serious symptoms, learning to live most of my time paralysed down my left side has been a tough development.
My CCI specialist doctor told me that this is often the case, “CCI can plateau for a while and then suddenly go downhill.”

*I’m not a doctor, this is just my personal experience

#craniocervicalinstability #ehlersdanlossyndrome #hypermobileehlersdanlossyndrome #pleaseshare #gofundme
hEDS | Craniocervical instability | Ehlers-Danlos syndrome | C

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Ahead of PoTS Awareness Day on 25 October, I met with PoTS UK at the Scottish Parliament’s Community Connect event to hear directly about the challenges facing people living with Postural Tachycardia Syndrome.

We discussed the lack of specialist services in Scotland and the inequitable access to healthcare, as well as the impact PoTS can have on education and everyday life.

PoTS UK has highlighted the lack of specialist services and the resulting delays in diagnosis and access to appropriate care. The Scottish Government has also confirmed that it does not currently hold a central assessment of the number of clinicians in Scotland with expertise in PoTS.

I’ll continue to raise these concerns and push for better awareness, support and access to appropriate services for people living with PoTS across Scotland.

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Two years ago, I couldn't have imagined being able to do this hike.

Not only did I keep up, I felt completely fine. Something I once thought was out of reach.

This POTS Awareness Month, @potsuk is celebrating small wins. For me, this is a BIG one. A reminder that all those small steps add up. Progress isn't always linear, but don't underestimate how far those little wins can take you!

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Health is a crown that the healthy wear, but only the sick can see 👑

When you’ve lost your health you realise what a gift health is.
As I deteriorated and then the little things like being able to care for yourself, sitting up safely, and the tiny little tasks that we all take for granted became impossible for me and I became bed bound I realised just what I used to have.
I often think about if I can just get surgery how wonderful it’d be to regain some of these simple things, I will never take any of it for granted again!

If you’re struggling with illness please know that you’re not alone in this, we are stronger together 🦓💪🏼 and I really appreciate you joining our little community here on my page. I believe in you and we will get through this together ❤️🫂

For more info on my diagnosis/ life situation see link in bio 🔗❤️

#craniocervicalinstability #ehlersdanlossyndrome #crowdfunding #spooniecommunity #chronicillnesscommunity

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Understanding Dysautonomia: What Are the Different Types? 🫀🧠✨

Dysautonomia isn't a single condition, it’s an umbrella term for conditions caused by a malfunction in the Autonomic Nervous System (ANS), which controls everything your body does automatically (like heart rate, blood pressure, digestion, and temperature regulation).

Because stretchy connective tissue can affect blood vessel tone and blood volume, dysautonomia frequently co-occurs alongside hypermobility syndromes, such as hEDS, and HSD.

Here is a quick breakdown of some of the primary forms of dysautonomia:

💓 Postural Orthostatic Tachycardia Syndrome (POTS):
The most well-known form. When moving from lying to standing, blood pools in the lower body. To keep oxygen reaching the brain, the ANS triggers an abnormally high jump in heart rate (often accompanied by dizziness, fatigue, and brain fog) without a persistent drop in blood pressure.

🩸 Neurocardiogenic Syncope (NCS) / Vasovagal Syncope:
The most common form of dysautonomia. It causes sudden drops in heart rate and blood pressure when standing, standing for long periods, or in response to triggers (like heat or stress), leading to lightheadedness or fainting.

📉 Orthostatic Hypotension (OH):
A significant and sustained drop in blood pressure upon standing, leading to dizziness, blurred vision, or fainting, because the body struggles to pump blood upward against gravity.

⚖️ Inappropriate Sinus Tachycardia (IST):
Characterised by an unexplained high resting heart rate (over 100 bpm) or an exaggerated spike with minimal physical effort, regardless of posture.

🌡️ Pure Autonomic Failure (PAF) & Multiple System Atrophy (MSA):
Rarer, progressive neurological disorders that cause widespread failure of autonomic functions, including severe orthostatic hypotension and temperature regulation issues.

Whether you experience occasional dizzy spells or manage daily #PoTS symptoms, understanding your specific autonomic pattern helps in finding the right mix of fluid/salt protocols, compression wear, and nervous system support!

To learn more about PoTS, the different types and more, check out our friends over at @potsuk 💜

- TeamHMSA

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Our first ever PoTS UK stream event! @potsuk 👏🏻 live from 1pm-11pm BST over on Twitch 💜 #pots #charityevent #fundraiser #awareness #potsie

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body’s in pieces

Was so good to do my second half marathon, this time for @potsuk #greatscottishrun

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I really hope one day with all yours help I’ll be able to look back on this whole experience and say I made it through to the other side of this ordeal and be able to then help others who are going through this. I really want to help others with CCI and EDS because I know what it’s like to live this, how it feels and I want to give back to others struggling 🫂💜
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#craniocervicalinstability #disabilityadvocate #edsawareness #ehlersdanlossyndrome hypermobileehlersdanlossyndrome
Hope | CCI | Ehlers Danlos Syndrome | hEDS | Chronic Pain | Neurosurgery | Crowdfunding | Surgery | Craniocervical Instability | Disabled advocate | Medical journey

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🚨WHEN YOUR OWN BODY BECOMES A CRIME SCENE🎭

This week, my PIP Tribunal paperwork arrived. Like so many disabled people, I’m fighting to be believed by a system that is supposed to support us.

So, rather than let the process break me, I’m turning my experience into PERFORMANCE ART. 🎨🔥

I fake being well. I DON’T fake being ill.

I WANT to work. I WANT my independence. I’m telling the truth, and I have evidence to support my claim.

The financial strain, the mental toll, the physical exhaustion of having to prove, over and over again, that you’re disabled ‘enough’, has really affected my mental and physical health.

I have every confidence in my appeal. But even if/WHEN I win, I keep asking myself…

AT WHAT COST?

How many people give up because they simply cannot endure the fight?

This is bigger than my tribunal. It’s about dignity, justice and systemic reform. I refuse to stay silent.

✊ MY BODY IS NOT A CRIME SCENE.

🎭 Turning anger into art and experience into activism.

🫂I would love to hear from anyone who has had to face PIP tribunal process and please keep sharing these important stories and comment below 👇

#DisabilityRights #PIPReform #PIPTribunal #DisabilityJustice #Artivism

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Day 14 of 31 days of Pots with @potsuk

I finally did it here I am at university something I have dreamed of for a while. I feel proud of both myself and my support network for getting me here and to enable university to be accessible to me.

#chroniclily #potsawareness #disabledcreator

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