When it comes to:
Do you recognize it? Tired of seemingly doing nothing, walking up a couple of stairs but feeling like you’ve just climbed a mountain, or did something fun but having to pay the price for it the next day, because you can barely stand on your feet, and see the world around you spinning like leaves in the wind?
Life is like a puzzle, you have to deal with all the pieces when you have an inherited heart disease such as cardiomyopathy. You are confronted with some limitations that didn’t exist before or never played a role, but now suddenly all surround you.
Emotions such as fears, insecurity, frustrations and powerlessness will not be unknown to you.
The big question is:
how to deal with it?
You cannot always open up to the people you love, because they are worried too, or simply have not the answers to the questions you have in mind.
In the end, there is only one person who really knows what it’s like to live with a heart disease. But there are other people struggling with the same matters like you and who also can be of great help. Of course, your partner or the person close to you is firsthand experiencing all the same things as well.
By connecting with fellow-sufferers, you probably can learn a lot about how someone else maybe have found some solutions to your challenges.
On the other hand, you may also have solutions that maybe could be helpful for someone else. To be helped is fine, but if you can help others, it gives a very good feeling for your self-esteem too.
Since the diagnosis of Brudaga syndrome, I have felt terribly anxious and I'm afraid to tell anyone.
I don't dare to exert myself and I am so tired:
is sport good for me?
I have gained weight since taking beta-blockers...
is this normal?
My husband and I want to have children, but we recently found out that I have an inherited heart condition: is it still wise to get pregnant?
Maybe good to know that our Foundation runs a private Facebook group called “Cardiomyopathie Onderzoek Nederland” (Dutch): you can find there other fellow-sufferers who have contact with each other. You can also get in touch with other gene carriers with or without symptoms (regardless of the type cardiomyopathy they have), but who also do have questions about buying a house or thinking about insurance policy… Maybe all the same topics you may encounter as cardiomyopathy patient or loved one.
Everything is possible!
If you have a Facebook account, please feel free to join our Community group (also in Dutch). You can decide whether you only read posts, but also want to react. No Facebook? Even then we would like to get in touch with you. It is very important for us to get a clear idea of what patients’ needs are, so that we can do our best to meet them.