Derry student Erin Houston back on track after life-changing heart diagnosis

A local health charity has become a lifeline for a young Derry woman facing a daunting heart diagnosis. Erin Houston (24) was diagnosed with Postural Tachycardia Syndrome (PoTS) two years ago, a reality that shifted her world overnight.

For most 24-year-olds, health concerns, especially heart related ones, are something to be resigned to the distant future. For Erin, they are an unfortunate reality. Erin is sharing her story of living with the condition as February is Heart Month. She is also supporting local health charity Northern Ireland Chest Heart & Stroke (NICHS) who have been a huge support in Erin learning to live better with PoTS.

Erin explains: “For a prolonged period of time I had been experiencing episodes of fainting. I went to my GP, was referred to different cardiologists, went to so many appointments and even opted for private healthcare to try and find out what was going on. Eventually I was diagnosed with PoTS.

“With PoTS, your heart rate increases very quickly after getting up from sitting or lying down. For me, this results in fainting and a lot of chest pain. I get pain in my left arm, heart palpitations and dizziness. When I was first diagnosed, I felt like this all the time- anytime I would go from sitting to standing up, anytime I tried to walk up the stairs, my heart rate would just go through the roof. It had a huge impact on what I was able to do on a daily basis.

“There is no cure for PoTS and when I was diagnosed in 2024, there was very little information or support given to me. I was 22 years old but was basically just told, ‘you have this condition and there’s not much can be done apart from be mindful of your salt intake and drink lots of water. I already knew that, I was already doing those things and not feeling any better so it was disappointing to hear there was nothing much anyone could do.

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“It’s hard no matter what age someone is if they are diagnosed with a long-term condition, but at my age, when for most people any kind of health condition doesn't even enter their mindset, it was really difficult. I had all these horrible symptoms, I had been stopped from driving, I had to take time out from my studies at university. PoTS was impacting so much of my life and it seemed like there was no way forward for treating it. I had hoped that after a diagnosis, things would improve, instead, I was left anxious and worrying about what the future held. Until I came into contact with NICHS.”

Karen Deery, an NICHS Care Services Coordinator, told Erin about the charity’s Heart Strong programme, which is an education and peer support programme bringing together people who have a diagnosis of a heart condition. Heart Strong has been designed to help participants learn more about their health and take the positive steps needed to move forward post diagnosis.

Erins says: “When I went to Heart Strong it was just so nice to be somewhere where, even though not everyone in the room had the same condition, and especially for me as I don't think I've ever met anyone else that has PoTS, but because some of the symptoms or issues everyone was experiencing on a daily basis were quite similar, it was just nice to know other people understood what it was like to live with a cardiac issue.

"Even though my family and my friends are really supportive of me, no one actually knows what it's like to live with something like PoTS on a daily basis, to have it impact on so many things in your life, unless they have something similar.

“The understanding of the other attendees at Heart Strong was so helpful. It was relaxed, everyone was able to chat and they were so open. I had been nervous about going, I was only in my twenties and worried I might be out of place, that it wouldn’t be the right things for me, but I needn’t have been worried at all, it was so beneficial.”

Erin pictured with her partner, Jake.

Going to Heart Strong wasn’t simply a positive experience emotionally and mentally for Erin as she explains: “I got real support in how to manage my condition that I hadn’t got before, and as a result, I am now able to do so much more. When I was diagnosed, I didn’t get much information on ‘you are allowed to do this or you shouldn't be doing this’ so I was really happy the programme covered areas like exercising, healthy eating, managing fatigue, real practical things that we could be doing to help ourselves.

“I used to dance before I had PoTS but then had to stop. Heart Strong taught me there were other forms of exercise I could try that might agree with me better which was really helpful. Before going to the programme, the thought of exercising scared me because I really wanted to, I just didn't know which sorts of activities would be ok. It was a relief to know there were things I could try like Pilates, and they might  help me build myself back up again.

“Another big learning I took away from Heart Strong is to not worry so much about what others might be thinking about you. I'm young, people can't see that I have PoTS and I used to worry people were looking at me, judging me and thinking, ‘why is she taking ages to come up the stairs?’ or ‘why is she using the lift when she’s young and fit?’ That used to really bother me, but Heart Strong made me feel more confident that it doesn't matter what others might think, you just have to do what is right for you and that has been a big positive change for me.”

Erin continues: “It was only through the help and support from Heart Strong and Karen that I was able to see a different way forward compared to how I had been living for the previous two years. After going to Heart Strong, I started to manage better and that has continued to improve as time has gone on.”

“I am back at university and have a classroom assistant job in a local school, doing four days a week. Before Heart Strong I wouldn’t have been able to get through one day due to fatigue but I’m able to manage a lot better now. I know the techniques I need to use to help me cope such as resting more if I have something coming up I know will take a lot of my energy, taking my time doing something if I need to and not worrying about what others might think just because I look fine.

Local health charity Northern Ireland Chest Heart & Stroke (NICHS) has been a huge support in Erin learning to live better with PoTS.

"Monitoring my salt intake and drinking lots of water, and doing exercise like swimming or Pilates which has made a massive difference to rebuilding my strength. Heart Strong really helped me get these management techniques in place and has made a world of difference to my life.

“I feel much more positive and optimistic and Heart Strong has motivated me to tell people that I have PoTS and spread more awareness about the condition. Someone might look young, strong, and healthy but they could have a condition you can’t physically see. We should all be a bit more mindful of that and not be so quick to judge as you can’t always see what someone might be dealing with. I also tell people about NICHS and Heart Strong as much as possible in case they can be helped by the charity like I was.”

Erin concludes: “I'm just so glad that I'm not still in the position I was before my diagnosis and NICHS’s help because it was just rotten. I’m happy now there is so much more I can do and I feel like I will keep improving as time goes on. A couple of years ago the future felt quite uncertain but now it's more exciting when I think about how far I’ve come and how far I might go.”

Ursula Ferguson, Director of Care Services at Northern Ireland Chest Heart & Stroke, comments: “We are very grateful to Erin for sharing her story and raising awareness of heart conditions this Heart Month. As her story highlights, heart conditions can affect anyone, at any age. Coronary heart disease is the biggest single cause of premature death in people younger than 75 in Northern Ireland and 185,554 people here are living with circulatory conditions so it is vital the public think about their heart health.

“If someone is affected by a cardiac condition, the help available from our Care Services team is extensive and, alongside Heart Strong, includes family support, health education programmes, and caregivers support.

“Our team works across Northern Ireland with people of all ages, alongside their families and carers. They are dedicated to supporting people in adjusting to life with a cardiac condition, helping them to enjoy life to the full, re-engage with hobbies, and improve their confidence, independence, and overall quality of life.” 

If you have been affected by a heart condition and need support visit nichs.org.uk/care-and-support for further information about Northern Ireland Chest Heart & Stroke’s support services.