I found you through doing a search on LQTS. My boyfriend is thought to have this & we've been through quite the ordeal the past few days. I'm just curious to find someone who has this to give us a personal account & advice, etc. If you wouldn't mind adding eachother, let me know!
First, let me say that I'm sorry you're having to experience that as a choice. Second, let me say that LQTS is certainly not the worst thing in the world that he could have - although not curable at this point, it is treatable (we're on Atenolol the generic for Tenormin).
Both my younger brothers and I were diagnosed in 1997. It's a genetic condition so if it's possible that he has it, siblings and parents should be checked and then family lines on the appropriate side. LQTS is associated with several different genes. My family participated in blood donation programs where they check genetically to see which gene ours was associated with. In our case, they didn't figure out which one but it's another option he can look into. It was free for us and I imagine they're still doing it. It is also reccommended that he see an electrophysiologist instead of just a regular cardiologist.
What happened / why do they believe that he may have it?
You guys should check out this website: SADS and specifically SADS LQTSI hope
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Anyway you look at it, it's been a LONG time!
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First, let me say that I'm sorry you're having to experience that as a choice. Second, let me say that LQTS is certainly not the worst thing in the world that he could have - although not curable at this point, it is treatable (we're on Atenolol the generic for Tenormin).
Both my younger brothers and I were diagnosed in 1997. It's a genetic condition so if it's possible that he has it, siblings and parents should be checked and then family lines on the appropriate side. LQTS is associated with several different genes. My family participated in blood donation programs where they check genetically to see which gene ours was associated with. In our case, they didn't figure out which one but it's another option he can look into. It was free for us and I imagine they're still doing it. It is also reccommended that he see an electrophysiologist instead of just a regular cardiologist.
What happened / why do they believe that he may have it?
You guys should check out this website:
SADS and specifically SADS LQTSI hope ( ... )
Reply
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