YWCA Welcomes Long QT Expert to Annual Leader's Luncheon Posted by Mark
Dr. Michael Ackerman, Associate Professor of Medicine, Pediatrics and Molecular Pharmacology at Mayo Clinic College of Medicine and expert in Sudden Death Syndrome, will address the YWCA Elgin’s 25th Annual Leader Luncheon on May 8th at The Seville in Streamwood.
Reservations are being accepted at the YWCA, 847-742-7930, or log on to YWCAelgin.org.
Sudden Cardiac Death During Adolescence in Long QT Syndrome Posted by Mark
The results of the largest-to-date follow-up study of Long QT Syndrome patients hit the pages of the Journal of the American Medical Association this September. The study followed 2772 participants from the International Long QT Syndrome Registry who were alive at 10 years of age and were followed up during adolescence until age 20.
Highlights of the study:
Three key predictors of risk for cardiac arrest and sudden death in Long QT Syndrome patients include: Timing and frequency of syncope (fainting), QTc prolongation (read by physicians on an EKG), and gender.
Among individuals with syncope (fainting) in the past 2 years, beta-blocker therapy was associated with a 64% reduced risk.
Young males (age 10-12 yr.) may have 4 times the risk of cardiac events related to LQTS, compared to females, but from age 13-20 years both males and females had relatively equal risks.
JAMA synopsis of the article (free to public): Click here.
ABC News Primetime: Sudden Arrhythmia Death Syndrome Posted by Mark Update: The ABC Primetime news story to accompany the segment appearing on Thursday's broadcast has been posted on the ABC Primetime Web site. Here is a link to that report: ABCNews.Go.com/...
Long QT syndrome is going to be featured on ABC Primetime News Thursday, April 6th at 10 PM Eastern (tomorrow). I received a recent e-mail from SADS.org that contained the update about the airing of the news segment. The report will feature Dr. Michael Ackerman (Mayo Clinic, Rochester, MN) whom I have had the great opportunity to spend some time with. I highly recommend watching! If you can't watch tomorrow, I believe ABC Primetime will also have the report available for viewing later on their Web site. I should note, I looked at the ABC Primetime schedule for information on the upcoming segment about Long QT syndrome, but I was not able to find any information yet. I can't confirm the time for the broadcast, but according to the letter from SADS.org, it should be tomorrow at 10 Eastern.
I would like to share a news story with you that was recently passed on to me by a member of a caring family who has recently suffered the loss of a wonderful person in their lives because of Long QT Syndrome. The family of Heather Wipperfurth of Madison, Wisconsin shared their story of loss, questioning, and recovery on a recent, five minute news segment about Long QT Syndrome by reporter John Stofflet from NBC news. I have chosen to share this article, which features a full video of the actual news report, because it was so very well reported and it touched my heart, as I am sure it will also touch many of yours. It is an overwhelming feeling for so many people when Long QT Syndrome first enters their lives. The family of Heather Wipperfurth has been kind enough to share their remarkable story with thousands of people in hopes that it will help others with Long QT Syndrome. This is an excellent television report which I suggest everyone take five minutes to watch.
Unforunately, the news station has now removed this story from their archive.
___ Long-QT-Syndrome.com was
started in the fall of 2002 by Mark, a long QT syndrome patient, in hopes of
supporting families and educating professionals within the medical community about long QT syndrome. Since that time, Long-QT-Syndrome.com has
helped to educate and support numerous patients and families affected by long QT syndrome.
In 2007 alone, over 10,000 people used our Web site as a resource for
learning about long QT syndrome.
___ At present, our plans
for expansion are centered on adding in a frequently asked quetions (F.A.Q.) page and
addiational printable long QT syndrome brochures for both patients and
physicians.
___ The physician
information section of our site is intended for medical professionals, but
patients may also find it a useful resource in learning more detailed
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Thank you for taking the time to learn more about long QT syndrome. If you have any comments, questions, or are looking for support, please let me know. I am more than happy to help,
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I would like to share a news story with you that was recently passed on to me by a member of a caring family who has recently suffered the loss of a wonderful person in their lives because of Long QT Syndrome. The family of Heather Wipperfurth of Madison, Wisconsin shared their story of loss, questioning, and recovery on a recent, five minute news segment about Long QT Syndrome by reporter John Stofflet from NBC news. I have chosen to share this article, which features a full video of the actual news report, because it was so very well reported and it touched my heart, as I am sure it will also touch many of yours. It is an overwhelming feeling for so many people when Long QT Syndrome first enters their lives. The family of Heather Wipperfurth has been kind enough to share their remarkable story with thousands of people in hopes that it will help others with Long QT Syndrome. This is an excellent television report which I suggest everyone take five minutes to watch.
