Newsletter Issue 12 Autumn 2014
P2 Your story P3 MedicAlert Partnership Upcoming events
myheart Meetings
P4 About myheart
CRY’s myheart network holds regular meetings for those young people living with a heart condition who would like to meet others in the same position as themselves and discuss their experiences and medical concerns in an informal but supportive environment. It does not matter how long ago you were diagnosed or whether you are currently undergoing any treatment; members attend myheart meetings for different reasons but they all leave having gained something new.
before. My circumstances had dramatically changed in this time and I was starting to question many things, as well as feel disconnected to my normal way of life; a sport-filled life. I am so pleased that I attended the myheart group for the first time. I found the day very encouraging, both by talking to expert cardiologists and also young people of my own age that had been through the exact same situations as myself. I will definitely be returning to the myheart group, come the next meeting.
Lucy Challis: My initial reason for going to myheart meetings was simply to meet other people who have heart conditions and had gone through comparable experiences. I wasn’t sure what to expect at first but everyone was so friendly and had lots of advice and suggestions to offer. Emotions sometimes run high but people are so supportive and make you feel comfortable. Early on in my diagnosis I had lots of questions and the informal session with one of the doctors is a great place to ask questions you wouldn’t normally ask. What I hadn’t expected to gain was such a fantastic group of friends who have such a unique bond. This is now the main reason I keep attending! It’s great to meet up with old friends and make new ones. I feel comfortable living with my condition now, but continue to attend meetings with the hope that I can now be that friendly face that first welcomed me and offer advice or simply talk through my experiences. Everyone has a different story but we are all linked by a common bond.
Rachael Marchant: I started attending myheart meetings in 2009 and attend regularly now because I find that meeting people who are a similar age with similar conditions to me means that for that period of time we are technically the ‘normal ones’. Meeting people who I can then keep in contact with is also a big help. Being able to meet with the cardiologist at myheart meetings is always useful because I find that I always forget to ask my usual cardiologist something and do not have to wait to see him to ask.
Tim Butt: I was initially apprehensive about going along to the myheart group, having suffered a cardiac arrest and been diagnosed with a heart condition 8 months
Jessica Maranzano: Attending the myheart group helped me meet other young people living with similar symptoms who understood how I felt physically and emotionally. Everyone was so supportive and friendly, and made me appreciate that I am by no means alone in experiencing the effects of a heart condition. It was great to compare experiences and recognise the difficulties many of us have experienced getting a diagnosis (or not, in my case). Being able to speak to Dr Papadakis was invaluable in order to help point me in the right direction and to go back to my own doctors with more concise questions. Autumn 2014
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