Due to the incredible success of Dana Vollmer, two-time Olympic gold medalist at the London Olympics, Long QT Syndrome (a rare genetic heart condition) has been brought into the spotlight. The SADS Foundation, a non-profit dedicated to supporting the families and saving the lives of those affected by heart rhythm disorders, would like to provide more information about Long QT Syndrome (LQTS).
LQTS and most genetic heart rhythm conditions are caused by a genetic mutation in your DNA , your genetic code . You are born with this mutation and you always have the mutation. Currently, LQTS is not a condition that you can get rid of, cure, or grow out of. There are certain times that the conditions have more symptoms or are more dangerous to the affected individual, however there may always be a chance for a LQTS-triggered cardiac arrest. For example, boys are at much greater risk of an LQT-triggered cardiac event before puberty while woman are at greatest risk after puberty. The risk factors are not the same for patients with type 1 LQTS and it is not the same for all 13 types of LQTS, or other SADS conditions.
By seeing a medical professional who specializes in SADS conditions, you can determine your risk factors for cardiac arrest during your lifetime. A LQTS or heart rhythm specialist will monitor you carefully, and together you can determine how much risk you are assuming if you choose to play competitive sports, swim, or participate in other activities.
If you have the genetic mutation for LQTS but have had NO symptoms at all, it does not mean you are cured; you may still be at risk of a cardiac arrest, although that risk is smaller for those who are asymptomatic and are older. In addition, you always have a 50% chance of passing it on to your children.
"We have learned so much about SADS conditions in the past few years and we are learning more all the time", says Dr. Michael Ackerman who recently published a paper on athletic guidelines for LQTS patients.
We've received a large number of questions regarding this topic so we asked Dr. Susan Etheridge, SADS Foundation VP and Cardiologist, to answer the popular question, "Can you grow out of LQTS?"
We hope this helps answer some of your questions on Long QT. For more information and a list of the warning signs, visit www.StopSADS.org
. Contact us directly if you have further questions, or need a physician referral.
Sincerely,The SADS Foundation
Alice, Laura, Sarah, Christine, Anne, Adrienne, Amy, Monica, Carol & Brandon