Torsades de Pointes

Prolonged  Q-T Syndrome

 Family members of Torsades Patients

 

I have been told that Torsades de Pointes is 100% congenital, so it is imperative for blood relatives to consult a competent electrophysiologist experienced with Torsades. The relatives need to understand the sudden cardiac death potential and the benefits of an AICD (automatic implantable cardio defibrillator). However, I realize this is easier said than done. Most people are terrified of having an AICD and wrongly assume it requires open-heart surgery. It is a simple outpatient procedure with a small 2 inch incision where the unit is slipped under the skin like a pocket and the wires are fed through a vein like a catheter. Family members who have never had any heart problems balk at the very suggestion that they may have this condition. Torsades is a ticking time bomb in families and these units would save them from unnecessary death. But even if the family member does not want this lifesaving device, the knowledge of which drugs cause a Torsades sudden cardiac death can also help to save their lives.

Most of my own relatives have not been checked. Their attending physicians think my Torsades condition does not apply to my family members. Even worse are the attending physicians for my son and siblings who have told them they do not have Torsades after my family members posed the question. My sister has had 2 near fatal heart attacks in the past year yet her cardiologists are telling her she does not have Torsades and they have prescribed medications to her which are on the Torsades trigger list. These very physicians and cardiologists currently attending my siblings and grown son refuse any efforts to consider Torsades and it has created a dangerous predicament. All of my family members have slow heart rates, prolonged Q-T and many other warning signs listed above. But as long as their physicians will not support the possibility and continue ignore their potential for Torsades, my family members continue to remain in jeopardy. Since they live so far away, it is nearly impossible for me or my physicians to intervene.

How many people have died from Torsades who were never diagnosed? The medical community needs to  be educated on this deadly condition.

 

 

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