I cannot relax.
My son and husband were diagnosed with Brugada Syndrome over a year ago. There is no cure. They both have been fitted with ICDs (implantable cardiac defibrillators). They see their physicians on a regular basis for check-ups, and are doing fine. They seem to have adjusted well to this diagnosis and follow-up treatment, which mainly consists of checking their health, and keeping their ICDs functioning and up-to-date.
Brugada Syndrome really has no symptoms. There is no outward sign of the disease. So, the drama of the diagnosis and ICD has settled into routine management of a serious, but not limiting, condition.
Still I cannot relax.
Why?
Because I have two children. My son is 18 and daughter, 23 (above, 1989) and they share identical genetic make-up from their parents. In a few years, they will begin families of their own. What about their babies? Will they be screened for Brugada Syndrome after they are born? What if there is still no treatment or cure? Will they, too, face a lifetime of re-checks and surgeries for their ICDs as their little bodies grow?
And, what if they are screened and the Brugada pattern does not appear on their EKGs? Does this mean that they don't have the Syndrome - and we can relax? Or does it mean that it simply hasn't show up yet? And if that's the case, how often then should they be screened? Should the family also be concerned about sudden infant death, which has been associated with Brugada? How is the risk different for infants of Brugada patients and their siblings who manifest the Brugada pattern, and those who do not?
No, I can't relax until there is more known about this disease and about how to treat it. I can't relax for my husband or my son or my future grandchildren, or the grandchildren of other Brugada patients and their families.
If you have Brugada Syndrome, you might consider participating in the genetics study. You can read about it at www.brugada.org. And of course, I hope those who can contribute financially to the foundation established by the Brugada family, will do so!
