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Dear members of the myheart network

Thank you to all who helped raise awareness of Cardiac Risk in the Young (CRY) and myheart during February for Heart Month. The hard copy newsletter featuring last year’s activities will be mailed to you shortly. Please find in this newsletter information on:
  • CRY Heart of London Bridges Walk 2018 - registration is now open!
  • Fundraising and Raising Awareness by Members of the myheart network
  • Blog by member of the myheart network, Rich Morris
  • New DVLA guidelines for individuals with cardiac conditions
  • FAQ form on the website
  • Upcoming myheart meeting
  • New private Facebook group for myheart
  • GDPR
Registration for CRY Heart of London Bridges Walk 2018
 
Thank you to all the members who have registered so far for the 12th annual CRY Heart of London Bridges Walk on Sunday, 24th June. Please email myheart@c-r-y.org.uk if you would like to walk with ‘Team myheart’ and meet other young individuals with cardiac conditions.
 
The CRY Heart of London Bridges Walk offers the opportunity to show support for CRY and raise awareness of inherited heart conditions and young sudden cardiac death. In 2017, over 1,400 people took part in the Walk, helping us to raise over £86,000.

You may have recently been diagnosed with a condition, or suffered the loss of a family member before being diagnosed yourself; whatever the reason you are welcome to walk either with Team myheart or with your family and friends. 11 myheart members registered to take part in the walk in 2017. Some of them got a chance to meet other members and share each other’s experience.

Please visit https://www.c-r-y.org.uk/bridges-walk/ if you would like more information on this event or to register.
Fundraising and Raising Awareness by members of the myheart network
 
Zak and Nikki Selfi's Partylite Candle Party

My son and I held a Partylite Candle party on the 22nd February 2018 in our coffee shop, managing to raise £310 for CRY, an amount we are thrilled with!

Nikki Selfi




My meeting with Caroline Lucas MP by Joseph Tanner

On Friday 23rd February, I had the pleasure of meeting Brighton Pavilion MP, Caroline Lucas. The meeting was set up by Caroline’s office because she was unable to attend Cardiac Risk in the Young’s Parliamentary Reception in November and she wanted to learn more about the work CRY do.

The previous year, Caroline signed a CRY pledge to support a National Strategy for the Prevention of Young Sudden Cardiac Death to help save young lives. Armed with CRY literature and information, I told my story and how lucky I was to be here today.

The meeting was brief but informative, pictures were taken and Caroline Lucas showed interest in joining the CRY All Party Parliamentary Group (APPG) and I hope that we will be able to work together in the future.
Stories by members of the myheart Network

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 overindulged 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 and 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 x-rays, ECG’s, and cardiac imaging to finally get to see an electrophysiologist. 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 irregular heart rhythm.

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 electrophysiologist 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.
New DVLA Guidelines for Individuals with Cardiac Conditions 

We have been told there has been an update to DVLA rules from January 2018. We are not sure if you are aware or have seen this so just wanted to share this with you. This may not be relevant to some of you so please check their website according your circumstances. They have included specific sections on LQTS and Brugada Syndrome.
 

www.gov.uk/guidance/cardiovascular-disorders-assessing-fitness-to-drive

It is important that any questions regarding driving are discussed individually with a specialist cardiologist who will be able to help with offering the best advice for your personal situation.
FAQ Form on the Website
 
myheart cardiologist, Dr Michael Papadakis will soon be filming questions and answers for the FAQ section of the myheart website. If anyone would like to send in their questions regarding their cardiac condition please email myheart@c-r-y.org.uk or complete the form on the FAQ webpage www.myheart.org.uk/faqs/. Please be assured, if you send in a question, you will remain anonymous.
Upcoming myheart meeting

myheart members’ meeting is planned at Friends House, London NW1 2BJ, between 10am-3:30pm on Saturday 24th November, 2018.

Thank you to all those who have registered so far. If you have questions about your condition or would like to meet other young people, aged 14 to 35, coping with the diagnosis of a heart condition come along to a myheart meeting. The meeting is for individuals who have suffered a cardiac arrest, have an ICD or are being considered for an ICD or have been diagnosed with an inherited cardiac disease. 

The day will begin with a session with cardiac nurses, Amanda Potterton and Polly Castelo followed by a session with former Pacing and ICD Service Manager at St George’s, Sue Jones. After lunch, there will be a Q&A session with myheart cardiologist, Dr Michael Papadakis. In this session, you are free to ask any questions you may have about your condition, the exercise(s) you can do or any other cardiac concerns you may have.

The deadline to register for the meeting is Monday, 22nd October, 2018. Please fill the form here to register for the meeting.
New Private Facebook Group for myheart
 
myheart’s new private Facebook group was launched in February. This group is for young individuals (aged 18 and over) where they can connect and share experiences with other people who have also 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 people who are in touch with CRY to connect, share their feelings and experiences with others who have suddenly been diagnosed with a potentially life-threatening cardiac condition, and be part of a network of support for one another. It is a place where we hope you will feel safe in the knowledge that you are not alone in how you feel.

This group is only available to join by invitation from CRY. The discussions within the group can only be seen by members. Although the myheart Coordinator has access to the group as a Group Administrator, it is not actively moderated by CRY. If you would like to join this group, please go to: www.myheart.org.uk/online-support/private-facebook-support-group/

GDPR
 
Data protection laws are changing in 2018. To ensure you continue receiving information from myheart please give your consent at https://www.myheart.org.uk/subscribe/
Social Media

Please follow us on Twitter for all the latest updates: www.twitter.com/myheart_uk

And like us on Facebook: www.facebook.com/myheartnetwork

Or subscribe to our myheart YouTube channel to watch latest member videos and videos by our cardiologist: bit.ly/myheartchannel

Please do not hesitate to contact the myheart coordinator if you have any questions on myheart by either calling on 01737 363222 or by emailing at myheart@c-r-y.org.uk

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


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