Meet our volunteers

What is your role at PoTS UK?

My main roles at PoTS UK are to send “thank you” emails and cards to people who have take the time to fundraise for the charity. I have also recently been tasked with reading PoTS related research/articles and archiving into an online library.

In addition to these tasks, from time to time I will review documents and literature and give my opinion before these are produced, give presentations to healthcare professionals in relation to PoTS and help pilot patient research questionnaires before they are placed into a study.

Can you tell us a bit about yourself?

I am 40 years old and symptoms of PoTS didn’t begin until I was in my early twenties. I changed career from an office job to nursing on a ward and within three months of beginning my new job I passed out. It took until 2016 to be officially diagnosed with PoTS (13 years later). My health declined dramatically in 2015 after having mild pneumonia. I didn’t give my body time to rest and rushed back to work to resume my role as a Ward Sister. This began a vicious circle of one illness triggering another-PoTS. EDS. MCAS and severe breathing difficulties (with a list of other chronic conditions). I spent most of that year in and out of hospital as a patient eventually becoming bedbound in hospital for 6 weeks. I luckily managed to recondition after months and return to a part-time lesser role at work. However after a year of attempting to work I was too ill to continue and had to be ill health retired.

Why did you choose to volunteer for PoTS UK?

Being unable to work, I wanted to use my experience as a patient and a nurse to help others. As PoTS symptoms vary on a daily basis having a regular job is out of the question for me but I still have a working brain and a passion to care! PoTS is relatively unknown as was the charity at the point I offered to volunteer so wanted to raise awareness and help those in the same situation.

What is your role at PoTS UK?

I am helping to set up a pilot for Peer Support Groups and will be a Peer Support Volunteer should this be rolled out. I assist in reading new official publications and making suggestions from a patient’s perspective, working on engagement with our community on social media and promoting our annual awareness day.

Can you tell us a bit about yourself?

I am an artist with Autism, ADHD among other physical and mental disabilities including MCAS, hEDS, commonly associated with PoTS.

Why did you choose to volunteer for PoTS UK?

My journey with dysautonomia felt isolated and alone for such a long time, it is my pleasure to help present and future patients feel part of something bigger and find comfort in each other. I love to help people and hope I can make a difference, even if just small.

What is your role at PoTS UK?

I help out by gathering medical information, and supporting areas such as organisation of retreats and social media pages.

Can you tell us a bit about yourself?

I have experience as a Cardiac Physiologist and lots of interest and knowledge in the field of PoTS.

Why did you choose to volunteer for PoTS UK?

It can be a scary and very challenging time suddenly becoming unwell or dealing with chronic illness, so I’d like to try and help by raising awareness and knowledge of PoTS to further improve patient diagnosis and support.

What is your role at PoTS UK?

Can you tell us a bit about yourself?

I live in Northern Ireland. My health started significantly to decline in 2008 and I haven’t recovered since.

I was diagnosed with PoTS in 2016. Since then I have been diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS), fibromyalgia, and it is highly suspected that I have mast cell activation syndrome (MCAS) too (diagnosis is not 100% confirmed as we do not have any MCAS specialists in Northern Ireland, but I am on some of the treatments MCAS specialists use to treat MCAS patients with).

Why did you choose to volunteer for PoTS UK?

PoTS has a significant impact on my life every day.

I volunteer with PoTS UK as I want to help out in anyway that I am able to. I hope that by volunteering I can make a different to others peoples lives in some positive way.

What is your role at PoTS UK?

I’ve helped out with miscellaneous tasks: a little bit here and there.

A few of the things I’ve done are proofreading and looking over various articles and documents for the PoTS UK website. I’ve also helped out with looking over surveys and giving feedback. And I’ve gotten the chance to help out on the video patient stories.

Can you tell us a bit about yourself?

I was diagnosed with PoTS in 2017 after a 4-year wait. I’ve also struggled with MCAS and EDS amongst other diagnoses. As my health improved, I wanted to give back to others, so I studied to become a health coach to those struggling with PoTS. And what better way to use my free time and increased energy than to help out a charity like PoTS UK?

Why did you choose to volunteer for PoTS UK?

When I was diagnosed, I felt so alone, confused, and overwhelmed. PoTS UK does so much to help those in that exact situation with the easy-to-read articles on their website, their virtual support groups, and through the events they run. I wanted to help with their mission so that more people discover PoTS UK, receive support, and ultimately feel less alone.

What is your role at PoTS UK?

I’m currently supporting the charity as a research assistant, where I can put my research and analysis skills to use to gather relevant information on PoTS-related literature. My work contributes to raising awareness and supporting informed decision-making in the advancement of PoTS research.

Can you tell us a bit about yourself?

I’m an independent researcher with 2+ years of experience in academic research and market research. I enjoy doing research as it helps me find how different pieces of a puzzle fit together. I work best when I’m in multidisciplinary teams to achieve common goals. In my free time, I like to sew and produce/edit videos.

Why did you choose to volunteer for PoTS UK?

I’m happy to be able to volunteer for PoTS UK because my interest and caution around Covid-19 and its long-term effects raised my awareness of conditions like PoTS. I wanted to contribute my skills to a cause that not only supports those affected but also drives research and awareness about this often misunderstood condition.

What is your role at PoTS UK?

I currently work for PoTS UK as a video editor, illustrator and graphic designer. I have created a number of educational videos including the ‘What is PoTS video’ that is featured on the main website as well as being shown on various ITV news segments around the UK as part of an awareness broadcast, I hope that my collaboration supports PoTS UK with their mission to raise awareness for the condition. 

Can you tell us a bit about yourself?

I am a freelance graphic designer, illustrator, 2D animator and video editor with over 8 years of experience in the creative industry. I’ve had the pleasure of working on a range of projects, from children’s books and comics to tattoos and adult fiction. I love using different tools whether they are digital or traditional materials like pencils and markers to bring each client’s vision to life. Outside of work, I’m a big fan of photography, baking and gardening (when my symptoms allow!) I didn’t want to give up on my career aspirations so decided to study BA Hons Illustration online part time, so that I could manage my PoTS symptoms better.

Why did you choose to volunteer for PoTS UK?

I have always been interested in how I can use my creative skills to support meaningful causes, when I saw that I had the opportunity to work with PoTS UK I was eager to get in touch. This charity is also close to my heart due to the fact I was diagnosed with the condition in 2020. The condition can be challenging so it’s incredibly rewarding to be able to contribute to an organisation that provides such important support and information to those affected by PoTS.