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.
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.
A hard copy newsletter is sent out at the begining of each 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 oppurtunitues ofr members in the coming year.
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.
We send out regular enewsletters to members and them updated about the latest myheart developments.
myheart has a Facebook group where memebrs (aged 18 and over) can connect and share experieneces with other people who have been diagnosed with a cardiac condition. The group is provate and can only be joined by invitation from CRY/myheart. The discussions within the group can only be seen by group memebers.
The website is accessible to all however the members’ area is exclusively reserved for myheart members who are between the ages of 16* and 35 and living with a life-threatening cardiac condition. This area includes an activity area where the members can safely share their thoughts, feelings and experiences. Members can also ask questions of each other. *Parental consent is needed for 16 year olds.
There is also the facility in the members’ area for members to create their own blog posts. This is a great way for members to talk about any tests or treatments they have had. Some examples of experiences shared by members include living with a cardiac condition, how they felt when they found out or when they had to give up sports.
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 Dr 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.
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:
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.