Any others diagnosed with Brugada Syndrome?

It's been 2 years since I've been diagnosed and have received my ICD/Pacemaker. Would like to talk to a few others about the condition. Upkeep, ways to deal with anxiety, compare doctors orders and such. Haven't found any support groups or even other people with it so would be nice to hear from others with the same condition.


1 Comments

Support groups

by Theknotguy - 2019-11-09 08:10:46

I don't have Brugada syndrome.  So I can't help in that area.  As for support groups, there is Mended Hearts in the United States.  There may be a local chapter near you.  

However, I do have to add a caveat.  I attempted to join the local Mended Heart's group in my area but found out it was a My-dog-is-bigger-than-your-dog local group.  If you hadn't undergone open heart surgery you weren't considered sick enough to join.  It was really hard talking to the back of people's heads.  So while there may be a group near you, be advised it may not come across as helpful as you'd like.  

The other avenue to explore is if your heart doctor(s) have a support group, or the hospital where you got your implant has a support group.  You can also see if your State has an option for working with a psychologist for which your medical insurance will pay.  

Finally for me, the biggest support group I've had has been this pacemaker forum.  People have always been willing to reach out and offer help.  If need be, maybe there are some people with whom you can have a private message when the situation gets too personal for public viewing.  

I do hope everything else is going well for you and you are adjusting well to your pacemaker.  
 

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In fact after the final "tweaks" of my pacemaker programming at the one year check up it is working so well that I forget I have it.