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Living with Long QT Syndrome and PH
My son was diagnosed with Long QT Syndrome two before his PH. The only reason we caught it was because I have Long QT, it’s hereditary and when my son started experiencing chest discomfort it made sense to check for that first. As it turned out, not only did he have Long QT but it was much more severe than mine.
Long QT Syndrome is also a rare disorder where your heart takes longer than usual to recover after each beat. It’s and electrical problem and it can be life threatening. When he was diagnosed we were told by doctors to pull him out of sports, which was really hard on him. We thought things couldn’t get worse but then fast forward 2 years when he was diagnosed with PH. The Long QT did challenge treatment. It always had to be considered before starting or stopping anything.
Do you have Long QT and if so, what has your experience been? How has it managed with your PH?
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