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Thank you to all of you who are helping raise funds and awareness of Cardiac Risk in the Young (CRY) and myheart in these unprecedented times. Please find in this newsletter information on:
  • CRY's Expert Team: Prof Sanjay Sharma's story
  • FAQ's about myocarditis with Dr Sabiha Gati
  • Webinar on CRY's Research by Dr Michael Papadakis (recording)
  • Blog by myheart members, Roxy Ball and Jess-Lee Welch
  • Dr Sabiha Gati's Interview with Sunrise Radio
  • Update to the CredibleMeds List
  • Bridges Walk 2021 registration now open
  • History of myheart
  • Private myheart Facebook group

CRY's Expert Medical Team: Prof Sanjay Sharma

By Alison Cox, from issue 82 of the CRY Update magazine

I finally confirmed that Sanjay was not your average person when he told me – during a discussion we were having on reminiscing – that he started writing his thoughts and experiences down when he was four. He was a serious, curious child and wanted to know about and remember everything. He already had decided to be a doctor – there seemed to be so many of his relatives getting ill and he was fascinated by the doctors all coming and going and able to make them better – he saw doctors as some sort of miracle people and determined he wanted to be able to do miracles too. From the age of four it never occurred to Sanjay to ever be anything else but a doctor.

His parents had met and married in the U.K. but decided, under pressure from his uncle, to return to Uganda which had just got its independence. Their standard of living rocketed and they enjoyed a beautiful house, servants and nannies. Most of all he thrived on the private education afforded them. He delighted in reading, learning, and discovering challenging new opportunities. At primary school the teacher recognised his ability and put him in the class above to better stimulate his appetite for learning.

The family returned to the U.K. just before General Idi Amin expelled all Asians out of Uganda. Sanjay was about to have his eighth birthday and remembered the stark contrast clearly. Their accommodation became a bedsit above a butcher’s shop in Walthamstow; he struggled to understand the cockney accents of the local junior school children, and they could not resist cruelly taunting him and his two sisters. He missed the security of an extended family close by. It was so rainy and cold. Adjusting was hard work and life took its time to slowly start improving. However – because of Idi Amin’s eviction of Ugandan Asians – his grandparents arrived and he and his siblings greatly benefited from their love and understanding as their parents worked hard to support them.

Read Sanjay's full story here

Interview with Consultant Cardiologist Dr Sabiha Gati on FAQ’s about myocarditis

Myocarditis is an inflammatory process involving the heart muscle. It can present acutely, subacutely or as a chronic disease process. It may present with focal involvement or diffuse involvement of the heart muscle. When individuals have symptoms, these can be highly variable from generalised fatigue, malaise, chest pain, breathlessness, electrical abnormalities of the heart and even a cardiac arrest.

Viral infections are the most common cause of myocarditis in the developed world.

How common is viral myocarditis?

The incidence i.e. the number of new cases of myocarditis is approximately 1.5 million worldwide per year and estimated at 10 to 20 cases per 100,000 persons. The exact incidence or prevalence of viral myocarditis is unknown as many cases are subclinical and follow a benign course. According to some estimates, 1-5% of patient with acute viral infection may involve the myocardium. So, a small number.

The majority of patients are young and healthy. Individuals who are susceptible include children, pregnant women and those who are immunocompromised.

Does exercise make it more likely you will develop viral myocarditis?

Myocarditis accounts for 5-10% of sudden cardiac deaths (SCD) in athletes and up to 20% of SCD in military recruits, suggesting that exercise may be a trigger for sudden death in this condition.

Clinical data linking intensive physical activity to manifestation of myocarditis have not been assessed in humans, but clinical observations do suggest it, given that we do identify a higher prevalence in athletes particularly as they are more likely exposed to microbes than the general population. There may be an increased risk of infection with contact sports or team sports with a higher potential for droplet infections.

We know from animal studies, specifically in the coxsackievirus B3, that there is a reduction in our immunity induced by intensive exercise that predisposes us to upper respiratory tract viral infection and possible involvement of the heart muscle.

How many days after a viral illness should you wait before exercising again?

Exercising individuals should be careful when they experience symptoms of coughing, sore throat, running nose or diarrhoea. Viral infection not only affects the heart muscle, but can also cause muscular soreness, joint pains and generalised body fatigue. If an athlete has these symptoms that may or may not be accompanied by a sub-febrile temperature, they should refrain from any strenuous exercise as this may further impair the immune system and increase the potential for..

Read Sabiha's full interview here

How CRY's research impacted the investigation/management of people at risk of sudden cardiac death - Webinar by Dr Michael Papadakis

CRY’s latest webinar  was held on the 17th December 2020 with CRY’s Consultant Cardiologist Dr Michael Papadakis – 

Dr Papadakis gave a presentation on how CRY’s research has impacted the investigation and management of people with conditions that can cause sudden cardiac death.  After the presentation, there was a Q&A session with Dr Papadakis. Watch it here

I am forever grateful to the GP who saved my life!
Blog by Roxy Ball

From being little I always remember I found running and PE hard. I was good at rounders because I could hit the ball and then race around the posts! But everything else I was bad at. I never had any stamina!

I always got worried about things too, it would just come on. I used to get horrible feelings about things and feel something bad was going to happen. It used to frustrate a lot of my family, because they couldn’t find any triggers for my worries. My friend’s stepdad used to call me Miss Catastrophe!

When I was 13 I contracted tonsillitis which then resulted in a strong positive test for Glandular Fever. The GP told me I needed two weeks off school. It was Christmas and I was devastated, all of my Christmas concerts were happening, and I missed them all. I played saxophone, clarinet, piano, recorder and sang in the school choir. The GP said that the month rest with the two weeks Christmas holidays would hopefully make everything better.

After that month, I didn’t feel any better. I felt tired all the time and achy. I went for my first clarinet lesson and my teacher was so worried that I’d gone pale and shaky, she abandoned the lesson, asked me to sit on a chair and summoned her mum who was upstairs! Read Roxy's full story here

We thought something was wrong with ECG leads or monitor but… Blog by Jess-Lee Welch

I was in my final year of uni studying Sport and Exercise Science and we were in the lab doing ECGs on one another.  When my lecturer (Dr David Oxborough) came to check on mine, he thought something was wrong with the monitor or leads. Long story short, the monitor wasn’t broken. After staying behind and completing an Echocardiogram on me, he referred me to Liverpool Heart and Chest Hospital. After 3 years of biannual Exercise Stress Tests, 24-hour monitoring, MRI scans and ECGs, I was diagnosed with Congenital Heart Block and had a Pacemaker fitted at the age of 24. They struggled to diagnose me as I had no symptoms and my heart kicked into action when I started to exercise, but with a resting heart rate of 30bpm, I was missing a few beats.

Hospital Selfie

Before diagnosis, I was none the wiser, so I wasn’t affected at all. When I was told they wanted to fit me with a Pacemaker, I went along with it and trusted their professional judgement and didn’t think anything of it and I carried on my day-to-day life. Read Jess's full story here

Dr Sabiha Gati's Interview with Sunrise Radio

To help kick off Heart Month 2021, Sunrise Radio invited former CRY research fellow and now current myheart Consultant Cardiologist, Dr Sabiha Gati, to speak with them about her research fellowship with CRY and her continuing work with the charity. Watch it here

Sunrise Radio have selected CRY as their charity of the year to help raise awareness and vital funds to support the charity during its 25th year anniversary.

 

Update to the CredibleMeds List 
We have received the following update from CredibleMeds
December 17, 2020

Re: Revision to the QTdrugs List

We are writing to inform you that Sertindole, a drug used in the treatment of schizophrenia, has been moved from the Possible Risk of Torsades de Pointes (TdP) category to the Known Risk of TdP category because of newly available evidence that it is associated with TdP.

Also, we hope you will try AZCERT’s web-based decision support program, MedSafety Scan®, available at MedSafetyScan.org for open-access use during the COVID-19 pandemic.   The program can help healthcare providers quickly assess a patient’s risk of QT prolongation and detect potentially dangerous drug-drug interactions.

Members with cardiac conditions may like to consider registering with CredibleMeds to be kept up to date with any changes to the QT drugs to avoid list https://crediblemeds.org/everyone/.
 

CRY Heart of London Bridges Walk 2021 registrations now open

We are delighted to announce that registration for CRY Heart of London Bridges Walk 2021 is now open! This year is a very special year for our flagship event as it marks the 15th anniversary of the walk.

This is an incredible milestone and we would love for you to join us on Sunday, 27th June from wherever you are in the UK. Read more here

History of myheart

Since CRY was first launched in 1995, there’s always been a huge focus on supporting families and individuals through the aftermath of a young sudden cardiac death – as well as funding research and screening to help prevent these devastating tragedies. That focus has never wavered in CRY’s 25-year history and has been at the forefront of our work and vision – but, it’s still important to emphasise (particularly as we look back over our past) that’s not all we do…

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.

As with many of CRY’s early milestones and developments, the initiative was very much pioneered by CRY’s founder, Alison Cox MBE, who has always remained a passionate supporter, advocate and champion of this inspiring group of young people. Read the full history of myheart here

Private myheart Facebook group

myheart has a Facebook group where members (aged 18 and over) can connect and share experiences with other people who have been diagnosed with a cardiac condition often ‘out of the blue’.

So many people who contact CRY/myheart want to talk to others who are in similar circumstances to themselves. The group is a private community for members of the myheart network to share their feelings and experiences with others who have suffered a cardiac arrest, inherited a cardiac condition, have a congenital condition or found out that they have a cardiac condition after a sudden cardiac death in the family and be part of a network of support for one another. A place where we hope you will feel safe in the knowledge that you are not alone in your experience.

The group is private and can only be joined by invitation from myheart. The discussions within the group can only be seen by group members. Whilst myheart has access to the group as an administrator, the group is not actively moderated by myheart. The rules for the group can be found here, and are also available in the Facebook group page.

To join the myheart network and find out more about the private area of the Facebook group please visit www.myheart.org.uk/join-myheart.

If you are already a member of the myheart network and would like to join the myheart Facebook group, please email myheart@c-r-y.org.uk

You can also send in a query to us at myheart@c-r-y.org.uk and we will post it on your behalf if you choose to remain anonymous.

Best wishes
myheart team
Copyright © 2018 Cardiac Risk in the Young, All rights reserved.

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Cardiac Risk in the Young
Unit 1140B The Axis Centre
Cleeve Road
Leatherhead, Surrey KT22 7RD
United Kingdom
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Cardiac Risk in the Young · Unit 1140B The Axis Centre · Cleeve Road · Leatherhead, Surrey KT22 7RD · United Kingdom