Support
The myheart network was developed in response to the feedback from young people who found that support groups available were not effective in helping them deal with issues such as fitting of ICDs, pacemakers and undergoing ablation surgery.
The myheart network provides personalised help, support and information to individuals who have been diagnosed with a life-threatening inherited or congenital cardiac condition.
Literature and Information
myheart Booklet
The myheart booklet was launched in November 2013 and has been a source of great support for the members since then. The booklet introduced by double Olympic gold medalist, Tom James MBE, who was diagnosed with a heart condition known as atrical fibrillation in the run up to the London 2012 Olympic Games. Also included are 10 personal ‘essays’ from young men and women who recount and talk through their own experience of suddenly being diagnosed with a heart condition.
Newsletters
The myheart newsletter is sent out once a year and is a round-up of the previous year’s events in which our members participated and raised awareness of CRY and myheart at. There are also new myheart my stories published in each issue, along with new events and opportunities of members in the coming year.
Cardiac Conditions in the Young: From ARVC to WPW
The booklet provides medical information for a young person who has been diagnosed with a cardiac condition or has been diagnosed with a cardiac condition or has been reffered to a cardiologist for further tests, as well as their family and relatives.Â
Meetings
myheart currently holds meetings twice a year in a central location for young people , between 18 and 35 years old, who have suddenly been diagnosed with a potentially life threatening heart condition or anyboday between the ages of 18 and 35 can come to the meeting is they:
- Have been offered or already have an ICD.
- Have suffered a cardiac arrest.
- Were diagnosed with an inherited cardiac diease.
Our members can gain support through meetings talking to others ina similar situation, hearing the different ways they have coped and discussing any issues that have arisen since their diagnosis.
Online & Social Media
Enewsletters
We send out regular enewsletters to members and them updated about the latest myheart developments.
Private 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. The group is private and can only be joined by invitation from CRY/myheart. The discussions within the group can only be seen by group members.
Youtube Channel
As well as videos sent in by members to help others – sharing their experiences of being diagnosed or undergoing certain tests and procedures – the myheart YouTube channel features a number of frequently asked questions which have been sent in by members and answered by myheart cardiologist Professor Michael Papadakis.
This is one of our free online open access resources to help those young people who are having to face these new life-changing challenges.
Members' only area on the website
The myheart website allows members to log in and actively contribute by sharing their stories, event write-ups, and questions, as well as engaging with other members’ content through comments. Members have the option to keep their uploaded content private or publish it publicly, giving them full control over their contributions.
