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myheart enewsletter
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Dear myheart members

We would like to give a warm welcome to our 50 new members who have joined myheart since January, many of whom have kindly said that they have found the myheart website with information about conditions and personal stories from other members very useful. We are very grateful to our members who have shared their own experiences on our website to help others.

If you would like to share your views with others, please do not hesitate to send in your comments to myheart@c-r-y.org.uk. We would be grateful if you could include confirmation of your permission for us to reproduce your comments when promoting myheart.
Bridges Walk 2016

Will you be joining us on Sunday 26th June for the 10th annual CRY Heart of London Bridges Walk?


There are now less than 4 weeks to go until our annual London Bridges Walk!

This event offers the opportunity to show support for CRY, and raise awareness of inherited heart conditions and young sudden cardiac death, as well as meeting other members who choose to walk with Team myheart. Thank you to all the members who have registered so far.

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 with Team myheart if you haven’t registered so far.

Registration online here  

James Taylor’s diagnosis of ARVC and myheart


Following the recent news of England cricketer James Taylor’s diagnosis of ARVC, some of our members were approached by their local media to share their own experiences of living with a cardiac condition.

CRY and myheart are grateful to myheart members Lucy Challis and Tim Butt for sharing their stories with the Yorkshire Evening Post.

Lucy Challis was diagnosed with ARVC herself after the tragic death of her brother, Stuart. Tim Butt, another myheart member and a cycling enthusiast, also featured in the story. Tim suffered a cardiac arrest when he was 23 and now has an ICD after being diagnosed with Long QT.

The full article can be read here.

Thank you also to another member, Nicola Kenton, for writing a blog about heart conditions. Her blog can be read in the members-only area of the myheart website.

myheart Website


Thank you to new members Kesha Watson and Guy Heywood who have shared their experiences of being diagnosed with a cardiac condition. Their blogs can be read under “Blogs” in the members-only area of the website.

Any UK resident between the ages of 16 and 35 with a cardiac condition can access the members-only area by registering for the website here: www.myheart.org.uk/register. Once your website account is activated, as well as reading other people’s experiences you could write a blog, comment on another member’s post, or share a video about your diagnosis or about any tests if you would like to. The forum gives the opportunity to ask other members questions about their experiences.

Another thank you to Zenia Selby who wrote a couple of training blogs, as well as another valuable write-up on the risk of return of WPW.

Another important development is our questions and answers section with our cardiologist, Dr Michael Papadakis. We will be filming some more answers to questions with Michael in the near future and if anyone has any questions, please feel free to send them to myheart@c-r-y.org.uk.

If you would like to ask a question of other members through our forum but wish to remain anonymous, please feel free to send it to me at kanika@c-r-y.org.uk and I will put the question on the forum. Another way of connecting with the other members on the website is tagging members by placing “@” before their username.

National myheart Meeting


April 17, 2016

The national myheart meeting was held at the Holiday Inn in Sutton, with 11 people registering to attend. Counsellor Alan Jones took the group to address any social problems created by their condition, and cardiologist Dr Michael Papadakis offered the opportunity for those attending to informally discuss any of their medical queries.

The next meeting will be planned for either late October or early November at the Holiday Inn, Sutton (details will be put on the website nearer the time). Anybody between the ages of 12 and 35 can attend a myheart meeting if they have an ICD or are being considered for an ICD, if they had a cardiac arrest, or if they have been diagnosed with an inherited or a potentially inherited cardiac disease.
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

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

Best wishes
Kanika
Copyright © 2016 Cardiac Risk in the Young, All rights reserved.


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