My condition made me realise how precious life is!

June will mark 4 years since I first discovered something wasn’t right. I was playing pool at the time in a competition match for prize money. There was a lot of pressure and my body could feel it. I was winning 1-0 and all of a sudden I started to go dizzy so I decided to have a drink and try and relax. I returned to the pool table to take my turn and next thing I knew the room went black and my heart was racing. I woke up around 10 minutes later not knowing what had gone on. After 2 hours of waiting I was taken to hospital via ambulance. After explaining all of my symptoms which consisted of my heart racing, sweating, dizzy and effected vision, I was discharged with heat exhaustion and dehydration. I didn’t know what to think other than something wasn’t quite right.

The next few days, I felt unwell and underwater so I called into work sick. After being off for a few days I returned to work to be told to go home. They later revealed I wasn’t allowed to return to site until I could prove I wouldn’t blackout again. This made the situation a million times worse. Nobody in the world can prove they will never blackout. My GP even declared me fit for work however my previous employer wouldn’t accept this, so I had to find another job.

From this day forward, I started to get palpitations quite often normally when I was stressed about something. I always remember the time I thought I was running late for work and I had palpitations then for around 5 minutes. I went back to the GP many times just to be told I’m stressed.

The second time I collapsed was at work’s Christmas party. I did not drink much alcohol, just a bit of dancing which led me to collapsing on the dance floor. I got checked out by paramedics who said I was fine and okay to go.

The day of a friend’s wedding was the next event and I attended the evening party. I was having a great time dancing and the next thing I knew I woke up around 5 minutes later in a pool of blood from my eye which I had split from the collapse. I was rushed to Nottingham Hospital and discharged the same day. A letter was sent to my GP. Each time tested my ECG was normal.

My GP finally referred me to hospital under the Cardiology department as I explained I was still getting palpitations. I was put under 24 hour ECGs which showed nothing and then a week long ECG which again showed nothing. My cardiologist made the decision to implant the reveal device. At this point, my heart was becoming progressively worse. Only 2 days later, I received a call to get to hospital right away as my cardiologist wanted to see me. He gave me a low dose of Bisprolol to try.

The tablets seemed to be working for a while however after some time the palpitations returned faster and harder than ever before. It was winter 2016 and it was cold outside and my heart began to palpitate whilst de-icing my car. From here I knew this was going to be a bad day. I was midway through my warehouse shift and I felt dizzy. My heart raced and I went blind. My vision returned blurred however I held my fingers close to my face and couldn’t see them. I knew this was serious, I was sweating like I had done a marathon.

I wasn’t thinking straight at all. I decided to call my doctors and ask for an appointment and I strangely got one! However, my team leader stopped me and made me ring 999. I’m one of the people who are very reluctant to dial 999 for some reason. I didn’t feel this was important enough. The ambulance arrived in super quick time with a cardiologist who plugged me in. It was at this point we realised how serious this was. My heart was racing at 288 beats per minute. I remember him saying to the crew get the stretcher this is serious. At this point my hands were blue due to lack of oxygen in my blood. When chatting to the cardiologist who told me the situation he said two sentences which will stay with me forever:

“If you were any older you wouldn’t have survived this”

“If you do go then I’ll do everything I can to get you back”

I asked questions like “will I be okay?” He didn’t reply to them.


We made the trip to the Royal Stoke and the Resuscitation team managed to calm my heart down and move me into the Coronary Care Unit. I was being observed for several days with the odd run of palpitations and odd beats here and there. After a few days had passed, I was moved onto a ward and then my tablets increased to the maximum dose with the view to go home. I wasn’t happy with this as the tablets were having a bad effect on me with the side effects such as feeling down and not wanting to do anything. I stayed in because I refused to be discharged, this proved to be the right thing to do.

Later that evening, my heart played up again with long runs of palpitations setting off the alarms connected to my chest. That same evening whilst resting, it happened again so the doctors decided to run an ECG whilst having a 1 to 1 supervision-this lasted for 12 hours. The ECG showed where the problem was and put me in for MRI scans first thing. The results showed a scar in between my heart and heart wall which created these palpitation beats.

My Cardiologist decided to put me in for a VT ablation. I was told this would be a short operation in which they would go through my groin in the artery leading to my heart ablate the affected area, which is burning on the area which was causing me problems. However when this was taking place, my heart went into overdrive which caused me to blackout twice which resulted in a shock from the defibrillator. I remember waking up and thinking I’m not coming out alive. This made me think of the people I love and the last things I did and said to them.

We discovered the operation was unsuccessful and we needed to act differently so he placed me on two drugs and offered me an ICD (implantable cardiac defibrillator). I accepted this and had the device implanted. Since then (touch wood!) things have been great and I’ve only had the odd run of palpitations. I’m still being monitored 24 hours a day by my device which transmits data back every day. Not only does it provide me with a shock if ever required but pacing to help my runs of VT.

Before leaving hospital, me and my fiancée analysed life and how precious it is. We decided to try for a baby when I was fit and well. Natasha was my rock and helped me every step of the way. We have since had our baby girl who is now 9 weeks old. Life couldn’t be any better-I was so lucky! Now my defibrillator sends daily data from my heart’s activity for them to analyse-this is so clever and impressive. If any problems are found, they give me a call. I now take 2 types of tablet (Flecainide and Bisoprolol). I take these 3 times a day, they are so good and I feel a huge difference.

Whilst I was in hospital, I had a text to say one of my friends had been rushed in too, due to his heart, but he didn’t make it. His brain was starved from oxygen for too long. The decision ­was made to switch off life support. I was thankful to the staff for letting me say my goodbyes even though it carried risk. I still carry Carl’s poker chip in my wallet as a good luck item. It’s working so far! Carl’s parents made the hard decision to donate his organs. Today he’s saved many lives. How amazing!

If my experiences taught me anything it is that life is too precious and short. So, live it how you want to! Any concerns you have whether it be your heart or any part of your body always get checked out. Sometimes the smallest symptoms can lead into something much greater.

I would like to give a special mention to the Cardiology team at the Royal Stoke University Hospital who looked after me every step of the way. Thank you also to Dr Morley Davis you has given me the chance to live a normal life which I will forever be grateful for.

If you’re in doubt about your heart and you feel the doctors aren’t doing enough or going in the wrong direction, don’t take no for an answer. I’m lucky enough to tell my story.

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Brugada Syndrome Diaries

When thinking about fundraising for a charity, CRY was an obvious choice for me as they’ve done so much for my family and I when we were younger. When I was just six years old and my Brother hadn’t even turned two yet we lost our Dad, he was just 34 years old himself. This was back in 2003 when knowledge wasn’t as advanced as it is now, so his death was classed as SADS, which can be known as Sudden Adult Death Syndrome. Mum’s always have a sixth sense when it comes to their children which is why mine insisted on making sure there wasn’t another reason my Dad passed away so young. My Mum first heard about CRY from the newspaper, she contacted them about our story and we were fast tracked for screenings at St George’s Hospital in London which is where we have remained for annual non-invasive heart tests.

Last year, I turned 20 years old and the clinic decided it was time for me to have an Ajmaline test, which diagnosed me with Brugada Syndrome. Following my diagnosis, I have created a blog called Brugada Syndrome Diaries to write about my story. This was to let others know that having a heart condition can be scary at times but I found strength and comfort in knowing I’m not alone and that’s what being involved with CRY has made me feel.

I contacted my local secondary school in hopes they would be able to facilitate a fundraiser day for CRY. This was about two months in advance of when I was planning the event to happen so there was plenty of time to order posters from CRY and have A LOT of practice tests with the cakes! Luckily my Brother still goes to this school and his lovely head of year got back to me and we began throwing ideas back and forth and it eventually came to a two-day bake sale for years 10 and 11. The bake sale was open to all years, but the awareness video I then created was aimed for the two eldest years. This was because CRY’s heart screening programme is for those 14-35 years old, so this gave me a target audience within the school to work with.

When preparing for a fundraiser such as a bake sale, make sure you practice again and again just to make sure there is no slip ups! It’s a good job everyone in my family has a sweet tooth because I practiced my cakes that many times I don’t think they’ll be eating anymore cupcakes anytime soon! I knew that I was catering for potentially a lot of people so around 40 cakes were made each day I had the bake sale and that is a lot of work to do by myself. So, I recruited some help, one of my friends Natalie who actually attends sixth form at the school and also my Mum, who both iced cakes beautifully and a lot better than I was doing them! Both days I sold out of cakes and to be honest I never expected to sell out completely on the first day let alone both! I did also make a video which was circulated around all of the tutors who were supposed to show it to their group of kids just to raise some awareness for CRY and the amazing work they do. I decided a video was the way to go because it encourages active engagement within that age group, I wanted it to be something they actually paid attention to and learnt from.

For the bake sale to be such a success meant so much to me because I have raised some money for the charity that has done so much for me and my family over the years. I have raised a total of £78.72 which for a local secondary school in a village in the middle of nowhere is pretty good going!

If you would like to read anymore about my story, please feel free to visit my blog via the link to learn more

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My Heart Story By Rich Morris

Hi Everyone, It has taken me a long time to find somewhere to share stories, thoughts and experiences with others in a similar position. And it feels good!

I have been active throughout my life, playing every sport accessible to me. My first experience of any cardiac issues was at around age 18, I think I had over indulged on beer one evening and found my heart racing and struggling to catch my breath. It was only a brief episode and I soon recovered. A few months later, I was competing in a county Golf match. I had just sank a winning putt and suddenly my heart started to beat rapidly. A team member took me to the nearest hospital. They rigged me up to an ECG, and decided to blue light me to Gloucester Royal Hospital where my heart rate was slowed from 220 bpm in AF, back to sinus rhythm.

With no further diagnosis or medication, I carried on with my life, not thinking about it too much.
At 20 I successfully joined the police force, started my new career with West Mercia Constabulary. During my first year my cardiac symptoms started to repeat. With no official diagnosis, and the force doctor unable to pass me fit I was unfortunately discharged.

After this knock back I decided I needed a diagnosis otherwise my life would continue to be disrupted. It took years of 24 hour heart monitors, beta blockers, chest xrays, ECG’s, and cardiac imaging to finally get to see an electrophisiologist. Dr Rajappan was fantastic, looked at my notes, and could see it was having an impact on my life. Being unable to play football with my son and go trampolining with my daughter was heart breaking. He offered an ablation to study the heart and see what was causing my symptoms.

I did have a rough time leading up to the ablation, divorce and diagnosis of Ulcerative Colitis, however I was actually positive about coming out the other side even stronger.

I had my ablation on 21st Jan 2015 (then 31) and finally found out what was causing the symptoms. I had an ablation for Atrial Tachycardia and probable AVNRT. These tachycardias were degenerating into Atrial Fibrillation and causing a dangerously high iirregular heart rythym.

It took around 2 weeks to feel myself again, however the team at John Radcliffe were amazing.

I have since had lots of palpitations, I am unable to sleep on my left side and unable to push myself physically as it reproduces cardiac symptoms however it has not gone into an abnormal rhythm since the ablation 3 years ago.

I feel I need to see my electro-physiologist again soon as it is starting to impact my life again, however I have not given up hope in getting back to full fitness one day.

Thanks for reading, and look forward to reading everyone else’s story 🙂

Brugada and me by Laurie Ketley

The 9th December 2016 isn’t a key date for me. On that day, I was with my Mum, Dad and younger Sister, who were finishing up from undergoing their Flecanide Challenges…which all fortunately came back clear, which was a huge relief.

At 18:30 I received a phone call from my Cardiologist, who went on to tell me I had Brugada Syndrome. I heard him conclude that we were to meet very soon and discuss how we moved forward, I agreed, emotionless really and quite matter of fact, I said my pleasantries and put the phone down and that is how I was diagnosed.

I looked at my Dad who I was with (at that time as I was splitting myself between the three) and I just simply said, “I’ve got Brugada.”

I had a few tears in my eyes, but I’m a ‘be strong’ kind of person. (I cried, lots that night though) Then I went and told my Mum and Sister whilst the doctor was there. It was such an odd experience, like a kind of a good result for my family really, an explanation, a strand of hope for a resolution of some kind perhaps. Almost I felt like I should be happy I’ve given my family the knowledge to move forward with this, but inside I felt lonely and a bit numb to be honest.

Why? Because my key date isn’t the date I was diagnosed. My key date is;

18th March 2016

A day that is etched in my memory for eternity. The day my beautiful, funny, vibrant and much loved younger Sister passed away.

Alanna Marie Ketley was full of life, which was stolen from her at the age of 18. When life is supposed to really begin and new paths are paved, hers were cut short. Prof Mary Sheppard and Cardiac Risk in the Young helped with Alanna’s heart personally, in the most needed CRY Centre for Cardiac Pathology and even came to her inquest in Coventry, which we are extremely grateful for.

So although I don’t want to take away the mental and physically daily struggle of having any health condition, in my case Brugada specifically. Personally, my struggle began 9 months prior.

I’ve been under cardiac investigation since 2012, I originally had one or two palpitations a week, increasing over time, until most recently being thousands a day. I remember also being pregnant with my little boy (now 4) and knowing that I was pregnant because of the extra strain on my heart and the palpitations dramatically increased. During this time I saw a Cardiologist who in front of 6 Students laughed, told me I was imagining things as I was probably suffering with pregnancy anxiety and left me on my way. If only she knew, perhaps if she had taken me seriously, done more tests maybe, my Sister would have also found out about our hereditary condition and she may have been alive today, also perhaps not. This is why my family had all their tests done together and at a different hospital and I had mine alone prior as I had been symptomatic and were already known to my Cardiology department, which at time also made me feel a little alone or perhaps isolated.

The tests became more extensive and invasive, albeit necessary and that I am grateful for. They were a little scary, often it’s more of a mental struggle that a physical one. I often put a brave face on, although sometimes it slipped slightly, I have to remind myself that it’s okay to sometimes not be okay, I’m still working on that! I pretty much had every test you can have, the most intrusive being an EP study, but be assured they look after you well.

Fast forward to my Ajmaline Challenge on 6th December 2016, I’m a nightmare to cannulate, so three different Doctors and 9 attempts later I was good to go! I kind of knew I had Brugada Syndrome straight away from the look on his face and the probable regret of him putting emphasis on how life changing a condition like Brugada could be in the pep talk to my Mum and I beforehand haha! Then there was a little awkward mumbled conversation about there being the Brugada pattern but he wasn’t qualified to diagnose and then he even special ordered me a full English breakfast to my bed?! Winner Winner!

Then 3 days later it was confirmed – partly to my harassment as I partly expected the result.

I’m not sure how I feel about it. Sometimes I feel like a normal healthy 26 (JUST!) year old and the Doctors are loopy, sometimes I feel a bit lonely, glum and the worlds against me. In March I was admitted to hospital after falling unconscious at my Mums, where I was then kept on continuous monitoring on the Coranary Care Unit for a week, which was erm, a bit lonely. Being the youngest by around 40+ years and watching all this poor people who had sustained heart attacks come and go, kind of hit home how serious Brugada is. On March 27th 2017, the day after Mother’s Day, I was fitted with a duel lead ICD and Pacemaker, this is where it gets weird!

So the morning of the 27th the am doctors walked in and announced I was to have my ICD fitted that day! I had initially been told it was expected to be later in the week, panic mode now fully on! My Mum and Sister, Kamarah visited that morning as they were off to the other side of the West Midlands to get Kamarah’s Implanted Loop Recorder fitted. So at that point I decided to keep my ICD surgery a complete secret. To the point that my Nan and Grandad came to visit me as I was being wheeled to surgery by surgeons in scrubs and I was going for an XRay!? I knew my little Sister would need my Mum there with her and also I didn’t want her appointment being cancelled or the upheaval on the family. So logically I decided that I would go at this alone, I remember then saying I was weirdly hyper that day – adrenaline for you!

Sometimes I’m guilt ridden, why did I get to stay alive and Alanna didn’t? I’m older? But I’m overall grateful and thankful. I do think about getting shocked frequently, I think I’m prone to worrying more when I’m a bit poorly, when my hearts playing up a bit, when I exercise in the gym, sometimes I think about putting the emergency stop rope clip attached to my top (which you’re supposed to) just in case I get shocked, fall and then have treadmill burn prints along my face – I’m not dramatic at all, needless to say, I don’t attach said pully cord as I’m 26 and that’s far too uncool. Mature like that too…..But if I was shocked…? Well aren’t I a bit lucky that I get to watch my little boy continue to blossom into a bigger boy.

Now, this is my worry. I worry about my little boy, Harlan. I often have nightmares. In fact pretty much every night. He has a 50% chance of having Brugada. It’s literally like flipping the coin of life. Mornings are the worst if Harlan has decided to sleep a little longer. Alanna was found in her bedroom you see, so I constantly worry that I will find Harlan the same way. But we will cross every bridge as we come to it. We are best friends my boy and I, a strong unit and for as long as we can be we will remain that way. If he was ever diagnosed, I honestly and truly don’t know how I would cope with that, but as with everything, I guess you just do.

I’m currently on 10mg of Bisoprolol. I find I’m constantly tired, drained and like I’ve never slept enough, my hair falls out too, that’s not very ideal now is it!? But I go to the gym and lift weights three times a week, I run 2.5 miles beforehand. So keeping an active lifestyle is important for me mentally and physically. Other than the big BS and Pacemaker my life after diagnosis hasn’t really altered because I haven’t let it! I do feel a bit like a loner in my family, although everyone has their own things to deal with and very similar they may be, they’re still not the same. The reality is, if I had been diagnosed with this prior to Alanna passing away, this diagnosis would have felt very different to everyone, myself included. It would have been a big thing, serious and important. I think I probably get a little bit less support now than I perhaps would have before, because that would have been the most heart breaking news our family had to deal with. It’s not now, for them or me. Sometimes I feel that I do have to deal with it all alone as I know that my parents are grieving their most horrendous and life altering loss that I don’t want to burden them with my problems, my Sisters are also the same. So I just keep quiet and I don’t really mention it. I also feel bad that my Sisters don’t have answers they perhaps want or need, so I feel like because I have an ICD and a strict diagnosis I am almost rubbing it in. It’s a bit strange. I think our family is struggling, with one thing after another so we just muster through by not talking at all about personal feelings.

This isn’t designed to be a negative or a morbid post, I’m just trying to be factual and honest, sharing my story, which is personal to me. I’m lucky to be here and I’m so thankful to the brilliant care I’ve received from my hospital, University Hospital Coventry and Warwickshire and the unbelievable support we have been able to access from Cardiac Risk in the Young.

CRY provide an abundance of support should you wish to seek it. I utilised the Sibling Counselling phone calls which allowed me to speak honestly and openly in private to a person who can appreciate the pain of losing a loved one and my lady could also appreciate the reality of diagnosis post loss too which helped me massively. I have recently raised £1,630.00 for CRY, alongside putting their charity link on the well-known Wolf Run website and I aim to raise a lot more in the near future.

I do live everyday now with a ‘life’s too short’ attitude. Book that holiday. Don’t text that Ex back! Educate yourself. Do things for you and hey, be a little bit selfish. Life’s a gift and regardless of your circumstance, illness or situation know that there is always someone around to listen or to just be there. That you’re special, wanted and unique. I might not be wearing your shoes, lived your experiences or share your illness, but know that you can work through it, against it or perhaps even with it.

“A candle loses nothing by lighting another candle”

Laurie-Elizabeth Marie Ketley

Remembering  Alanna Marie Ketley 11.09.1997 – 18.03.2016

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I thought I had a flu but then I suffered a cardiac arrest! by Jake Fordham

On Tuesday the 21st of February I was sent home from work a little early as I was feeling unwell. My colleague had only recently returned to work after having the flu so I assumed I was coming down with something similar. My manager asked me to call in the next day if I was still feeling unwell but hoped I would be feeling better. Wednesday morning arrived and I was feeling worse. I had a dry cough and high temperature.   I didn’t think much of it; I got up and went downstairs, made myself some soup and got back into bed.

The next 24-48 hours are a blur to me however were the most life changing moments of my life.

I was asleep upstairs and my mum was in the kitchen making herself lunch. She had the radio playing whilst keeping an ear out for the dogs. After a while she noticed the dogs behaving in an odd manner, they were running up and down the stairs and barking at my door as if they were trying to tell her something. Mum could hear me making a noise and thought I was singing but when I didn’t answer she  went upstairs to find out what all of the fuss was about. Opening my door she found me having what she immediately believed to be stroke or fit. Without any hesitation the paramedics were called as the operator guided my Mum in what to do next.

At this point I could not talk or move, I was making noises but they were nonsensical babbles. While waiting for the paramedics to arrive my mum was checking to see how much function I had. She was asking me my name, if I knew where I was, and what my date of birth was. For my mum, the eleven minutes that the paramedics took to arrive felt like hours. When they arrived I was slowly coming out of what they thought may have been a seizure. My speech was returning, although a little slurred, and I was starting to appear fine. Then, out of seemingly nowhere my eyes rolled, I went limp and, what we now know is, my heart stopped. By this point my dad had arrived back home after being called by my mum. My dad told me that as the paramendics gave me CPR, he held my hand, but knew something was seriously wrong because as he held my hand he could feel me getting cold and lose colour, as blood stopped circulating around my body. I became limp and lifeless. Seeing that CPR alone was not working the paramedics rushed into action and proceeded to use a defibrillator to try and start my heart. After each shock, they performed CPR again and it wasn’t until 8 minutes later and on the third shock, that my heart finally began to beat again.

By this time another paramedic team had arrived and I was treated with an injection or antibiotics and antiviral, as they suspected it may be Meningitis. I was rushed to my local A&E and up to the critical ward where I was put into a medically induced coma while various tests were conducted to see why and what had happened. I was tested for several different illnesses. I had blood tests, a lumbar puncture and many many ECG scans.

As I was bought out from the coma 24 hours later I remember feeling dazed and very confused. I had tubes and machines connected everywhere there was space. My memory was awful and I would forget everything anyone told me seconds after. I didn’t know where I was or why I was there.  Also didn’t believe the doctors when they told me about what had happened.

I was transferred to the cardiac ward where I was monitored and assessed for three weeks before being transferred to a specialist cardiology hospital.

Once at the cardiology hospital I was diagnosed with Brugada Syndrome very quickly and was told I would and should have surgery to fit an ICD (implantable cardioverter defibrillator). A machine that would shock my heart and give it a sort of reset if this was to happen again. This was going to be fitted under my collar bone. I was scared and unsure but the fear of putting myself and my family through this all again was to powerful to turn down the procedure.

The hospital explained to me that I had suffered with Brugada Syndrome for all of my life but contracting the flu had raise by body temperature to a point that sent my heart into spasm.  They believe my first seizure was bought on by a cardiac arrest which I some how managed to come out of on my own.

I was 21 yeas old. I was fit and healthy. I had no cardiac problems prior to this incident and hope I have no more going forward. It was a shock to everyone and affected so many different people in so many different ways.

The first 6 months after the incident was tough. I was constantly scared of it happening again. I was terrified of going to sleep at night in fear of not waking up. Doing exercise was difficult as I thought that this may set my heart off again. 9 months later and I am still dealing with the affects of what happened but I am coming to terms with managing my diet and leisurely activities. I am now playing football and being active again.

Being diagnosed with Brugada Syndrome and having a cardiac arrest were the most terrifying things I have ever experienced, but the support of my family and friends was and is amazing. I have met lots of people through CRY that have experienced similar things to me and this was extremely helpful. I now know that my thoughts and feelings towards it are normal and that having Brugada syndrome is not the end of anything but is simply a part of me.

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I suffered a cardiac arrest at my sister’s wedding!! by Carly Williams

I have no diagnosis for my SCA yet.

It happened in July this year and I have had all the tests but the cause is still unknown, I have MVP but they have said that is unrelated. I am 34 And was at my sister’s wedding as maid of honour. As I walked down the aisle, I told my friend I felt dizzy and then as soon as I sat down at the end I collapsed onto her lap.

A wedding guest and my two cousins were first aid trained so as soon as everyone realised I wasn’t breathing, they started CPR, I was also so lucky as the hotel had a defibrillator which they used to administer one shock which worked. The hotel was in London and the ambulance arrived in 8 and a half minutes and I was taken to Guys and St Thomas’ and put in an induced coma for 24 hours.

I was so lucky and was left with no lasting memory problems. I just can’t remember a few days around the event.

About 3 weeks later, once they had carried out a number of tests, they fitted an S-ICD. I also now take beta- blockers.

I am pretty much back to normal now apart from still very tired at times and anxious too after what has happened.

I was diagnosed with LQT after 20 Rebecca Scheffe

My name is Becky and I was diagnosed with Long QT Syndrome in 2010 when I was 37 years old.

At the age of 17, I had a terrible experience as I went to bed one evening and had my first seizure, it was so terrifying I thought I was dying. The doctor was called but he suggested it was a panic attack. I had fallen out of the bed and had convulsed, thrashed around, arched my back and my eyes rolled back (this is what my friend who witnessed it had said). I can only describe the feeling like I was dreaming which stopped abruptly by manic, loud, distorted noises and the feeling of being pushed, pulled and falling all at the same time.  When I eventually came around, I was very confused and unable to speak for a while.

I had more seizures every year or so and they diagnosed me with Nighttime Epilepsy and prescribed Epilepsy medication but I continued to have the seizures. They usually came in clusters, which was horrible as I would worry about having one and stress and sleep deprivation would bring them on. I would never sleep in a house alone and I dreaded going to bed every night. I cracked my head and teeth a couple of times and chewed my lip so it was swollen and bruised.  Sometimes I would have a migraine straight away so would have blurred vision, headache, numbness and sickness.

In 2007, I had a cluster of seven over three days so a Neurologist referred me to see a Cardiologist as he thought it could be an arrhythmia problem. After an ECG was taken, they decided to put a reveal device in to monitor my heart activity for up to three years. After two and a half years, I had another seizure so they were able to take a reading which showed a pro-longed QT Interval. I was then diagnosed with Long QT Syndrome Type 2. A few days later I had an ICD fitted (pacemaker/defibrillator) and prescribed Nadalol beta blocker for life.

Being diagnosed 20 years later was such a relief but also a shock that I had survived when others had not. I had EMDR Therapy due to PTSD from the seizures which has helped so much as it used to rule my life. Day to day I live a normal life but unfortunately it’s not been smooth sailing, six months after having the ICD fitted I had DVT on the vein where the lead is in my arm. A year later, a cyst burst on my ovary and because of the warfarin I had internal bleeding and was in hospital for nine days. The following year my lead cracked so that was replaced and in a month’s time my battery is due to run out so I’m having the ICD replaced.

Having had these experiences, I think it has made me appreciate life and cherish every day. I have a great quality of life, I got married three years ago and we are lucky to have a gorgeous son who is six months old who unfortunately has inherited the Long QT so he is currently on a liquid beta-blocker.  I just hope that he won’t have to go through any trauma and get to live life to the fullest!


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Positive screening story of Tommy Whitnall, Tonbridge Angels’ centre forward

Watch how screening helped, Tommy Whitnall, Tonbridge Angels’ centre forward.


Jessica Goddard

Living with long QT syndrome

Jessica Jane Goddard was born on the 27th July 2007. She was 3 years old when in May 2010 we received a phone call that would change her life forever…

My name is Rebekah Goddard and I am Jessica’s mother. I was diagnosed with long QT syndrome in July 2001 at the age of twenty-five, after a series of massive seizures that starting occurring just after my eighteenth birthday. It was my father who effectively saved my life on the day of that first episode. When he found me, I wasn’t breathing and didn’t have a pulse. It was his quick actions and medical training from his RAF days that effectively saved my life. To this day my dad struggles to discuss what he remembers about the day he found me.

As a mother, I cannot even begin to imagine what must have gone through my parents’ minds finding their daughter in such a way. Then later, discovering that the first initial seizure with long QT syndrome has such low survival rates… No parents should have to worry about burying their own child. This is now a worry that I have to deal with on a daily basis with my own child.

I married my husband Ian, two months after getting my own diagnosis of long QT, and having a pacemaker fitted. A couple of years later, we discussed the possibility of having children, and that’s when I hit a stumbling block. At the time, there seemed to be very little information about pregnancy and birth, as well as the possible effects of my condition on my unborn child. So after gathering information to the best of our abilities and a lot of discussion, we decided that with a 50/50 chance of me passing on my condition, we should go ahead and have children.

Our first child, Grace Elizabeth Goddard was born by scheduled cesarean section at Yeovil District Hospital on 27th August 2004.

To say the operating theatre was packed would be a massive understatement! It seems the world and his wife had appeared out of the woodwork to witness Grace’s birth. It was reassuring that so many people were there to help if required. Paediatric nurses, cardiologists, anaesthetists, medical students…

Ten minutes after her birth she experienced her very first ECG!

Rebekah with Grace and Jessica

Aftercare was quickly arranged by the hospital for out-patients appointments to monitor Grace as she grew.

So far, so good.

Two years and eleven months later, the whole process was repeated for Grace’s younger sister, Jessica.

When Jessica was five months old, both Jess, Grace and myself had bloods taken for genetic testing, which we were told could take quite some time. Yet the idea of finally knowing one way or another would mean that we could accept whatever the outcome, deal with it, and finally live our lives to the fullest.

As my mum always tells me, “fore-warned is fore-armed.”

It really did take a long time for the test results.

But now we know.

I took the call from the geneticist’s office completely out of the blue, on a Thursday afternoon. I remember it vividly.

I was asked if I wanted to wait to get the results until my next appointment at the hospital, however, I knew we had waited long enough.

It was funny, as when I was asked what my thoughts on what the test results would be, I instantly said, ‘one has it, one hasn’t.’ The lady was shocked to say the least. I knew then that it was Jessica that had it and I told her as much. She was utterly dumbfounded. I don’t know how I knew, I just did… Mother’s intuition?

I put the phone down and sat for what felt like an eternity, but all too soon it hit me. I sobbed… A lot.

I felt relief for Grace, knowing she was free of it all, but mostly I felt guilt. Knowing it was because of me that Jess now had a difficult journey ahead of her. Not knowing where we go from here.

It turns out not only were the genetic tests positive, she has now had three or four ‘dodgy’ ECGs, showing long QT.

After spending the night in hospital on a telemetry set for monitoring her heart whilst on medication, she is now taking 13mg of propranolol twice a day; easier said than done with a three year old…

So here we are today.

She at least she has some protection now, although whether she will require a pacemaker later on down the line is still under discussion.

She also has something that I never did. Someone who truly understands… Right by her side, every step of the way. No matter how uncertain she will be feeling at times, I will always be there for her. I can hand on heart say that I know how she is feeling. Been there. Done that. Got the t-shirt!

Her story is ongoing, as is her life. But one thing we are certain of is we are not going to wrap her up in cotton wool. Life is to be lived, and I want to her to experience it to the fullest.

Antony Eames

Tony Eames wrote his story to be included in the myheart booklet which was launched in November, 2013.


I had my first episode of fainting at 4 years old. From then on I passed out regularly. Sometimes I passed out several times a day. During this time I was not allowed to do any school sport or go out in the playground.

I was never invited to other children’s parties as parents were so concerned that I might pass out. I even had to be escorted to and from school and around the school so that I was never alone in case I fainted.

These attacks continued on a very regular basis until it was finally suggested that I had an ECG and was diagnosed with long QT syndrome, a rare heart condition that can cause sudden death in the young, at the age of 12.

For eight years my family doctor had treated my fainting attacks as epilepsy and panic attacks. It was suggested that I be sent to a psychiatric institution, something my parents refused to allow. No-one had tested my heart and all the time I was at risk of a sudden fatal attack. I don’t understand why it took so long for someone to think it might be a cardiac problem and not mental at all.

After my diagnosis I was put on medication to regulate my heart rhythm. At the age of 18, when in my final year of A levels, I became ill again and required a pacemaker implant to back up my medication. My family and I were devastated to be told I needed an implant as I was now enjoying my teenage years after a traumatic childhood.

Soon after the implant I left the security of home for University life in Newcastle. However I decided from the start to be open to my new friends about my heart condition and pacemaker. This gave me confidence, which was seriously lacking during my childhood.

The implant has enabled me to do far more strenuous exercise. Table tennis, jogging and visits to the gym are regular activities. It is fantastic to be free to participate in so many things that for so long I could not even think about trying. Last year I tested my own confidence and achieved a major personal goal by abseiling down from the Tyne Bridge for charity. This really did test my heart and my parent’s nerves!

Through CRY, my story may help further publicise awareness to the health professions and the public of why young children may be dying suddenly and the simple tests that are available. After hundreds of fainting episodes, a pacemaker fitted and taking daily medication I regard myself as one of the lucky ones and intend to live life to the full.

  • Tony