That’s the call from a 27-year-old man from Manchester as he kicks off a new charity event to raise funds &awareness for Cardiac Risk in the Young less than 4 months after his own lifesaving surgery
- Tom Roberts from Manchester speaks out about his struggle to be heard about “more than a decade of sinister symptoms” and his determination to secure a diagnosis
- Earlier this year, the 27-year-old – who is launching his ‘Heart 2 Heart’ fundraising challenge on June 18th – was successfully treated for the cardiac condition, Wolff Parkinson White syndrome
- EVERY WEEK IN THE UK, 12 YOUNG PEOPLE (AGED 35 AND UNDER) DIE FROM A PREVIOUSLY UNDIAGNOSED HEART CONDITION
- Tom – encouraged and supported by his close friends Rochelle Antley and Billy Clements– is now committed to raising awareness about the work of Cardiac Risk in the Young (CRY) to promote the importance of heart screening in young people and its ongoing mission to help prevent these tragedies
- For further information or to request an interview with Tom, please contact Jo Hudson in the CRY Press Office in the first instance on; 0770 948 7959 / firstname.lastname@example.org
In February 2022, Tom Roberts finally underwent heart surgery [ablation therapy] to correct an abnormality which, if left untreated, could have had devastating consequences.
And, to mark the first anniversary of his initial diagnosis, on Saturday 18th June, Tom will be joined by best friends Rochelle Antley and Billy Clements (plus many other supporters they hope to pick up en route!) as they kick off the Heart 2 Heart Fundraising Walk, completing 20 miles from Edgeley Park, to Old Trafford, over to the Etihad, and back to Edgeley Park.
The charity, Cardiac Risk in the Young (CRY), ‘warns’ that in over 80% of cases of young sudden cardiac death (YSCD) there will be no signs or symptoms – and that the first sign that anything is wrong, will be the last sign.
However, Tom was in the unusual position of having experienced over 10 years of concerning and sometimes debilitating symptoms, which unfortunately were not recognised by medical professionals and were often ‘dismissed’ as anxiety or panic attacks.
Tom explains; “Throughout my teens and early 20s, I was affected by numerous vague – yet often debilitating – symptoms. These ranged from palpitations and chest pain to a racing heart and serious bouts of fatigue, even though I was a young and seemingly sporty youngster at the time.
“However, no-one could identify what was wrong or causing the symptoms, so it was usually put down to stress and anxiety. Very sadly, this was all further exacerbated when my mum tragically passed away in my early twenties – but at no time was I offered an ECG to explore any potential problems. Instead, I was just prescribed betablockers and anti-anxiety medication.
“I continued getting on with my life, the best I could – travelling when possible and enjoying my job in conveyancing – where I still work now, with very supportive employers.
“But it was only some years later, when during investigations for an unrelated complaint, I was finally offered an ECG which picked up my WPW and I was immediately referred to a cardiologist.
“Mr Skene at his team at Stepping Hill Hospital, Stockport were amazing although I was quickly told that [due to delays in my diagnosis], medication was no longer an option and that I would need to undergo a surgical procedure [ablation therapy to ‘destroy’ the additional electrical pathways in the heart] otherwise I ‘might not make it to 40.’
“I was scared, petrified in fact, but determined that after everything I’d been through, I would survive. And 8 months later I was successfully treated, following a 4-hour procedure at Manchester’s Wythenshawe Hospital.
“Now, a year on from my initial diagnosis, I’m delighted to say that I feel better than ever and excited to be taking part in the Heart 2 Heart event and doing all I can to raise awareness of CRY and hidden heart conditions in young people.”
Tom adds; “Over the past year, undiagnosed heart conditions have often been in the news, following the on pitch cardiac arrest of Danish footballer Christian Eriksen and the premature retirement of Man City legend Sergio Aguero. That’s why we’re encouraging all participants in our walk to wear their Club’s colours with pride to show solidarity across all sporting communities, not just football, but for those who are diagnosed later in life. CRY helps to screen young people for these conditions which may not fully affect you until your adolescence or early adult life, providing essential diagnosis that can lead to effective treatment and surgery.
“We have participants from across the North West joining us on the day as we aim to be a sea of colour as we trek through Stockport, Manchester and Trafford.”
Every week in the UK, around 12 young people (that is aged 35 and under) die suddenly from a previously diagnosed heart condition. 80% of these deaths will occur with no prior symptoms – which is why CRY is so committed to the importance of specialist, cardiac screening. CRY also funds pioneering research into the conditions that can cause young sudden cardiac death as well as providing a unique bereavement support network for all families who have been affected.
CRY’s screening programme now tests around 30,000 young people (aged 14-35) every year in the UK. Although it won’t identify all young people at risk, in Italy, where screening is mandatory for all young people engaged in organised sport, they have reduced the incidence of young sudden cardiac death by 90%. This is because sport – whilst it does not actually cause sudden cardiac death – can significantly increase a young person’s risk if they have an underlying condition.
CRY’s screening programme is overseen by its Consultant Cardiologist Professor Sanjay Sharma, Professor of Inherited Cardiovascular Disease and Sports Cardiology at St George’s Hospital London. He is also the Medical Director of the Virgin London Marathon. Professor Sharma makes no charge for supervising CRY’s screening team and due to this support, the programme is significantly subsidised.
In October 2002, CRY launched its pioneering myheart network, designed to reach out to young people who had been diagnosed with an inherited or congenital heart condition – and had undergone treatment (whether surgery or long-term medication). To this day, the myheart network offers help, support and information to young people who are coping with a diagnosis of a heart condition. www.myheart.org.uk
Alongside its website, myheart has also launched its own YouTube channel, populated with important and current content and a Facebook forum for members’, too.
So many of the young people associated with myheart over the years have achieved amazing goals, including academic, professional, and sporting success. Others have spoken in Parliament and across numerous media platforms, met celebs such as David Walliams, Pixie Lott and Gold medallists, carried the Olympic torch, and even been asked to ‘toss the coin’ at the start of the Wimbledon men’s final!
Many have organised and taken part in amazing fundraising events – and now, it’s Tom’s turn!
Dr Steven Cox, Chief Executive of CRY adds: “From very early on in our journey and development as a charity, it became clear that there was an unmet need to support those young people who had been diagnosed with – and treated for – a serious cardiac condition, providing them with information, education and most importantly opportunities to meet up with others in a similar situation, as they learnt to navigate to their ‘new normal’ and readjust to daily life and activities.
“Funding research and screening to support our ongoing mission to prevent deaths from hidden heart conditions in young people will always be a huge part of our vision but as a charity we will always celebrate and champion the achievements of those young people who have been diagnosed with a condition and successfully treated to ensure they can enjoy a safe, active and normal quality of life.
“By speaking so publicly about his own personal and very recent experience, we know Tom will be helping to promote awareness amongst many teenagers and young adults who, all too often, are simply not aware of the prevalence of sudden cardiac death in young people or the steps that can be taken to help protect themselves and others.
“This might include signing up for screening, being aware of their family’s ‘heart history’ and recognising possible symptoms, however rare they might be.
“On behalf of everyone at CRY, I would like to wish Tom and all the team every success in their fundraising challenge and to thank them for supporting CRY.”