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British sufferers make yourselves known please!

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Hi everyone,

I was thinking it might be an idea for us to meet in person and talk about treatments that work, health care and alternative therapies etc.

I realise that might be difficult for most of the users here, as you live on the other side of the pond, so to speak.

So with this in mind, I wonder if I could just ask how many British people use this site, and whether you might be interested in meeting up somewhere?

I have no idea when or where yet, but I think the first step is to see if there are enough users to make it worthwhile?

I'm in Bristol, which is in the South West of England. I could travel anywhere really. I think somewhere central like London or Birmingham might be best.

Are there any Scottish users out there? I'vbe not found any through this site, although I was told in dundee there are 7 POTS sufferers in Scotland. Would be great to find some of you! :)

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I'm not British but we travel to Cornwall once every two year (we have Bristol on our route). That's because my dad lives in The south west of Cornwall! We've been there in 2004 for our summerholidays and staid at The Lizard peninsula (as you can see on my picture). This year we're travelling to the south of France. When we're coming to England again, I'll let you know (that's if you're still interested by then)

Best wishes,


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Well, Persephone, you haven't gotten much response yet, so I thought I'd bring this back up to the top. I drink enough tea to live in the UK - grow english roses - dream of visiting the UK again but... I live in the US. Sorry I can't make the trip to meet you. I haven't even been able to meet Briarose yet and she only lives a few miles away!


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Isn't it weird how most people are from theUS? I suppose the fact POTS is still so rarely recognised here is a big part of it. THe ONLY person in the country offering treatment in Professor Mathias in London. Oh, and some electrophysiologist dude in Glasgow...

Stop hiding people! :o

It's ok, I'm vegan, I won't bite! :blink::P

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  • 1 month later...

Hi Persephone,

Guess what? I am from London!!!!!!!!! Whoopeeeee your first English person to respond. Aren't the others great though for responding even though they are not from this Sceptred Isle!

I would love to meet anyone with POTS or EDS or both for that matter. It's a bit tricky for me at the moment to physically meet, but I certainly could do email contact to start with, and who knows what from there.

I would love to be in touch with anyone from the UK or from anywhere else who would like to be in touch.

Great to see this thread.



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Guest Julia59


I'm sorry, I wish I could be there to meet with you. I always dreamed of going to the UK---but i'm so afraid of flying it would take miracle to get me on the plane.

My son's friend Matt is from England---he lives in Cornwall. I think it's near the coast. My son just broke off an engagement---and Matt was supposed to be in that wedding. :D

It was a good thing---this girl was toxic for him, everyone knew it, and it took him a long time to realize it. He is now trying to rebuild his life. Now he has a new girl in his life, her name is Carlie, and we all love her. She's beautiful, smart and everything he would want, plus she loves all of us back! She has a beautiful little 14 month old daughter named Kaela. I think Carlie was the straw that broke the camels back in helping my son realize he was making a mistake with his Ex-girlfriend.

The poor kid had a panic attack when he and his ex went to Bed Bath and Beyond to register for their wedding gifts. That was a couple of weeks before they broke up.

My son Mike said he and Carlie will fly Matt from England if they have to to make sure he is in their wedding. They are happy and right for eachother. They are both so much in love with eachother.

I was reading our family history and I found out part of our family is from England, and the rest is from Ireland. So naturally that is where my heart is----I really want to go there some day. I'll probably need anesthesia to get on the plane.

Julie :0)

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I'd love to meet up, but travel is pretty difficult right now... however if we did meet up anywhere, London would be god - I could get a sleeper down. My Dad lives in Cornwall, but I haven't visited for over a year, as I haven't been well enough to get there...


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Hello -

I have family on your side of the pond...for whatever that's worth:-) Lucky for them, none of them have this wonderful health fun to deal with! I wanted to give you a link though...it's for a youth organization but still thought you'd be interested in at least perusing it....the "seizure" terminology is not really a true seizure but rather fainting, as in neurocardiogenic syncope. If you hadn't come across the site yourself yet I thought it might make you feel a bit more at home!

take care,



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