POSSIBLE ARVC DIAGNOSIS FOR ELDEST SON AND YOUNGEST DAUGHTER

[ginge567]

Hi my eldest son 22 has had a MRI and the consultant thinks it’s arvc. My two other daughters have just had echocardiogram and my youngest daughter 14 scan is showing an anomaly on the right ventricle. Absolutely devastated we are now being referred as a family to a geneticist. Still in shock any advice on what we can expect? The cardiologist is now referring my two girls for a MRI.? Both my husband and I are gutted. Any advice on how to deal with this and what to expect. X

[Shar28]

Hello and welcome to the forum. What a huge shock and frightening situation for you all. It’ll take time to get to grips with it and understand what it means for each of you. But things will settle and life will continue, maybe with some adjustments. That doesn’t mean it’ll be a poor quality of life, far from it. A new normal will emerge.

Have you discovered the charity Cardiomyopathy UK? They have a great website and a brilliant nurse helpline. They offer support to the whole family and have a group just for young people too. Here’s the link about ARVC. cardiomyopathy.org/arrhythm...

Best wishes to you and to each and every one of your loved ones.

[ginge567 in reply to Shar28]

Thank you for this I will take a look.x

[JanJan7]

Hi there I’m so sorry to hear that and I understand what a stock it is. My 26 yo daughter was diagnosed with arvc January 20 after having pours of, what they thought was Myocarditis since 21. My 28 year old daughter also has symptoms. My 26 yo who was diagnosed with arvc now has a defibrillator fitted.

I also have a son who now has yearly mri scans. They did a genetic test on my 26 yo daughter and found a faulty gene so we all now need to be tested.

Please don’t hesitate to contact me at any time. Take good care Jan