Meet our Peer Support Volunteers

What is your role at PoTS UK?

I’m a peer support facilitator and I help run regular groups to support those living with PoTS, as well as parents and carers.

Can you tell us a bit about yourself?

I’m a Clinical Physiologist specialised in education, lifestyle management, and exercise prescription (where appropriate) to treat conditions such as PoTS, CFS/ME, hEDS, Fibromyalgia, and Long COVID. I also have PoTS, CFS/ME, and Endometriosis myself, so I’m extra motivated to help people with these conditions.

Why did you choose to volunteer for PoTS UK?

I moved to the UK in 2021 and prior to this I lived in Australia. When living in Australia I always found that PoTS UK provided excellent resources to share with my patients, so when I moved to the UK I was very excited to become involved with a charity that is as passionate about helping people with PoTS as I am.

What is your role at PoTS UK and what do you enjoy about it?  

Can you tell us a bit about yourself?  

Why did you choose to volunteer for PoTS UK?

What is your role at PoTS UK?

Online Peer Support Volunteer / support with developing surveys and work in Scotland.

Can you tell us a bit about yourself?

I live in the Scottish Borders and am married with 2 children. My husband is disabled, following a severe head injury and I am a carer to him as well as a my teenage son who has PoTS, alongside working full time as a senior manager in the NHS. I trained as a Radiographer and then moved into IT Project Management in 2000, and have held a variety of jobs in the NHS both operational and managerial since then.

Why did you choose to volunteer for PoTS UK?

My sons was diagnosed with PoTS in 2018, the symptoms he experiences daily has had a significant impact on his life and that of our family and we have struggled to get any access to care and treatment. I want to raise awareness about PoTS and advocate for patients and their families to get access to services.

What is your role at PoTS UK?

Peer support volunteer.

Can you tell us a bit about yourself?

My name’s Harriet and I’m from Surrey. I started becoming unwell in my early teens and after a long journey of misdiagnosis, was diagnosed with PoTS and hEDS in 2016 whilst at University. My background is in psychology and I currently work in mental health, where I’m passionate about supporting the wellbeing of individuals impacted by chronic health conditions.

Why did you choose to volunteer for PoTS UK?

Receiving a diagnosis of PoTS was incredibly challenging, and I am grateful to PoTS UK for the support they provided in signposting me to the correct medical support at the time, as well as continuing to build awareness of this little known and understood condition. Talking with other people with PoTS has always been hugely helpful for me, and I therefore enjoy being able to give back to the charity through being part of a team that works towards connecting individuals going through similar experiences.

What is your role at PoTS UK?

Peer support volunteer.

Can you tell us a bit about yourself?

I first became ill with PoTS symptoms when I was 17, but wasn’t diagnosed until I was 21 and in my final year of university. I managed to complete my studies, my experiences with PoTS providing me with inspiration for my final research projects – looking at the healthcare environment female cardiac patients experience and exploring how we define disability for those with chronic illnesses. I now work training social researchers in survey data use, with a particular interest in health and disability. My PoTS still affects me every day, but I’m slowly learning to work with and not against it!

Why did you choose to volunteer for PoTS UK?

PoTS UK was a vital source of information for me when I was newly diagnosed, so I want to give back to them anyway I can! I chose to volunteer with the support groups, as when I was diagnosed I’d never met another young person with a chronic illness (let alone PoTS!) and know how lonely it can be! It’s great to be able to provide support to others in that situation now.

What is your role at PoTS UK?

Peer Support Volunteer.

Can you tell us a bit about yourself?

Since leaving school/college I worked in Education, as a practitioner, a teacher, a trainer, a facilitator and a professional development specialist. Unfortunately since developing PoTS my absence at work went from the odd day off to two long term absences. In April 2022 I was made redundant but at the same time my GP (who has been fantastic through my diagnosis and on-going care) suggested I was no longer fit for work and suggested I should consider giving up work and going on long term sick for the foreseeable future. I now find myself for the first time in over forty years not having to meet other peoples agendas and I love it! Don’t get me wrong I feel like having been diagnosed with PoTS and other associated disabilities (I’ve had an horrendous three years) that I am going through the grieving process for my old life. I’m no longer independent, I have to rely on my partner and my family to support me every day. Even more so now that I have had my driving licence taken off me. But equally I realise I’m not the person I was, I can’t work 70-80 hrs a week and travel all over the UK at the drop of a hat- I’m lucky if I can focus for twenty minutes! I need to make sure if I’m travelling that I have all my medication (now there’s an expensive story) my feed, my walker and all my other paraphernalia before I even think about what I’m going to wear!! However, I’m here and there are still people in this world we live in worse off than me and so I live each day as it comes. My motto is as the saying goes – ‘when there is a storm don’t panic’. I’ve learnt to dance in the rain albeit with a walking aid or perching stool!

Why did you choose to volunteer for PoTS UK?

I chose PoTS UK as my charity to volunteer for as their policies, principles and values are aligned with my own. Their website is easy to access and their provision for people needing information on PoTS, regardless of who they are, is phenomenal and professional without the sensationalism that some groups add! They do an excellent job and reach out to their volunteers for support and guidance on what is needed, they listen and take on board suggestions, comments and ideas. They are a good organisation that continue to meet peoples needs and are growing from strength to strength.

What is your role at PoTS UK?

I am a new Peer Support Volunteer and I’m really looking forward to getting involved!

Can you tell us a bit about yourself?

I live in North London with my girlfriend and our dog, Johnathan. I’ve been unwell since I was about nine years old but my PoTS diagnosis took almost 20 years to get my hands on! I’ve had some very well years and some very unwell years. At the moment I’m not so well and I’ve been adapting to life as a wheelchair user which I’ve found has given me a lot more freedom. I work in music as a publicist and I get a lot of enjoyment in helping emerging artists build their careers in music. Outside of working and socialising, I am a proud supporter of trashy TV!

Why did you choose to volunteer for PoTS UK?

After many years of being unwell and navigating the various struggles and challenges, I feel like my most recent relapse has allowed me to accept my illness and disability as part of my identify. It’s been such a lengthy process to adapt my life and I really want to help others who are perhaps at the start of their journey. It can be so isolating to be unwell and creating a space for connection with people who can relate and understand is so important. I think the support groups are invaluable and I’m really happy to be a part of PoTS UK!

What is your role at PoTS UK?

I’m a Peer Support Volunteer. This involves hosting online peer support sessions for people with PoTS. I enjoy helping to make a place where people with PoTS can feel understood, help each other and feel less alone. Many people never come into contact with others with PoTS in their day-to-day life so it’s lovely to see a community forming.

Can you tell us a bit about yourself?

I’m from the North West of England where I live with my family and two dogs. I’ve had PoTS symptoms for over ten years but it’s only in the last few years that I got my diagnosis. My symptoms got really unmanageable in about 2018 and that’s when I started having investigations. It was only when I was about to be discharged, without an answer, that I suggested PoTS. After a tilt table test, I was diagnosed. I have a bunch of other conditions and disabilities too. I use mobility aids and sometimes a wheelchair. My health does limit me but I try to make the best of it with help from my family and friends.

Why did you choose to volunteer for PoTS UK?

I saw how beneficial peer support groups can be for people and I wanted to be part of that. It’s a great feeling to give something back. There’s such little support for PoTS which makes the work of PoTS UK feel even more essential!

What is your role at PoTS UK?

Peer Support Volunteer. It so rewarding to host these groups. When my family were first diagnosed we had nowhere to go, and I hope having someone who has walked though steps, as I have, can offer some support and sensible suggestions to ease the worry of how to manage this complex condition.

Can you tell us a bit about yourself?

I work in the animal charity sector helping to improve the lives of pets and pet owners.

Why did you choose to volunteer for PoTS UK?

So others can not feel as alone as I did when diagnosed.

What is your role at PoTS UK?

PoTS UK Peer Support Volunteer

Can you tell us a bit about yourself?

I am medically retired due to PoTS and EDS. I am a full time wheelchair user and Mum to a wonderful 9 year old boy. I enjoy machine embroidery and spending time with friends (when health allows). I have recently modelled in a couple of runway shows and featured in a photoshoot for an active wear brand, which is something very new but I’m embracing saying yes to things that make me smile.

Why did you choose to volunteer for PoTS UK?

I didn’t realise how much I valued my work in a school as a safeguarding lead until I was forced to medically retire. I knew I’d built up a set of skills that could help people, but started to feel less useful. I’ve gained so much from online communities that I wanted to get more involved.

What is your role at PoTS UK?

Peer Support Volunteer. I really enjoy being able to help other people connect, learn from one another and find support for PoTS. It also has given me a great sense of purpose being able to help facilitate this and allow people to feel less alone.

Can you tell us a bit about yourself?

I first developed symptoms of PoTS at 16 and was diagnosed in 2014 in my first year of University with both PoTS and a number of other associated conditions. At University I studied Physiology and Pharmacology and was able to include PoTS and dysautonomia within my projects and coursework whenever I could. I completed my studies over 8 years and undertook an Internship afterwards. I spent a long time fighting against my conditions and although they still have a large impact on my daily life, I am learning how to manage them and still live my life to the fullest.

Why did you choose to volunteer for PoTS UK?

Due to currently being unable to work, I felt that I needed to find purpose and use my chronic illness experience to help others. I know how isolating living with PoTS can be and how difficult it can be to find people who truly understand what you’re going through. The peer support groups are something I wish I’d had access to in those first few years post diagnosis. PoTS UK is a charity I’ve used countless times for information and resources and it feels good to be able to give back to them.

What is your role at PoTS UK?

Peer support volunteer. I enjoy being able to facilitate a group where people with PoTS can get advice, learn from each other and most importantly feel understood and not alone.

Can you tell us a bit about yourself?

My name is Sian and I live in North Wales. In May 2020 I caught Covid whilst working as a Physiotherapist in the local hospital. I then noticed I was having PoTS like symptoms of tachycardia, palpatations, cognitive dysfunction and lightheadedness to name a few. I was diagnosed with PoTS and Orthostatic Intolerance. I am on various medications which have improved my ability to exercise more, which is very beneficial to me. I am able to cycle using an electric bike and wild water swim. It was through covid and swimming that I met my current partner Jan who also has Long Covid (every cloud has a silver lining). I don’t work now having been released from my job as a physio on medical grounds. I am now learning to adapt to my new life and have taken up woodwork.

Why did you choose to volunteer for PoTS UK?

When I was experiencing PoTS symptoms I found it really difficult to get anyone to take me seriously (apart from my GP). I found the PoTS UK website very useful and informative. It helped me find a PoTS specialist closest to me. Once I received a diagnosis, I started attending the support groups. Again these were brilliant and a great source of information. I then felt strongly about being to help the charity and others with PoTS so I become a volunteer for the support groups. It gives me a sense of purpose and it is nice to help such a good organisation.

What is your role at PoTS UK?

I am a Peer Support volunteer. I help to host the peer support group sessions. I really enjoy working alongside the fabulous volunteers as well as meeting everyone who attends the support sessions. It’s a fantastic community who all support one another, we can all learn so much from each other and be there alongside each other through our ups and downs.

Can you tell us a bit about yourself?

I live in Yorkshire with my husband, Sam and our tortoises. I now work in the NHS as a Recruitment Advisor. I used to be a nurse until I became too ill to work (with PoTS) in 2016. Since my diagnosis I’ve been able to improve my quality of life hugely by managing my symptoms and gradually increasing my level of activity. It’s still a work in progress! In my spare time I love walking in the Peak District and am also a bit of a bookworm. Next time you meet me ask me what I’m reading!

Why did you choose to volunteer for PoTS UK?

I found my early years of being diagnosed very lonely and isolating, as I was too unwell to work and wasn’t able to socialise much. I would have loved to have been able to attend peer support meetings myself and so want to enable others to have the opportunity to attend support groups virtually and meet with others going through similar things.