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Wed, Jul 22 11:23am · Do you know the SADS warning signs? in Genetic Heart Rhythm Diseases

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Do you know the SADS warning signs?

Sudden Arrhythmia Death Syndromes (SADS) are genetic heart conditions that can cause sudden death in young, apparently healthy people. These SADS Conditions include:

Check out this video (recorded February 2019 for National Heart Month) where Dr. Ackerman discusses the warning signs of sudden cardiac death.

Facts about SADS Conditions (On SADS Foundation’s Website)

  • Each year in the United States, approximately 210,000 Americans die suddenly and unexpectedly due to Sudden Cardiac Arrest. (American Heart Association 2017)
  • 10-12% of Sudden Infant Death Syndrome (SIDS) cases are due to Long QT Syndrome.
  • LQTS is now known to be 3 times more common in the US than childhood leukemia.
  • 1 in 200,000 high school athletes in the US will die suddenly, most without any prior symptoms—JAMA 1996; 276

To learn more about SADS conditions, you can visit:

Meet other people talking about genetic heart disorders on Mayo Clinic Connect. Join the Heart Rhythm Conditions group to join the conversation, share experiences, ask questions, and discover your support network.

For up-to-date information, please follow Dr. Ackerman and the Windland Smith Rice Genetic Heart Rhythm Clinic on Twitter by clicking the links below.

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Fri, Jul 17 8:13am · Long QT Syndrome: Mayo Clinic Radio in Genetic Heart Rhythm Diseases

Hi @odette, welcome to Mayo Clinic Connect! The etiology/cause of WPW is still unknown in most situations. However, in a few cases, there is a genetic etiology. It may be beneficial for your husband to discuss his diagnosis with his cardiologist or care team and determine if a referral to a genetic provider would be appropriate. You can learn more about Wolff-Parkinson-White syndrome here: https://www.mayoclinic.org/diseases-conditions/wolff-parkinson-white-syndrome/symptoms-causes/syc-20354626

You may also be interested in connecting with other people who live with WPW in the Heart Rhythm Conditions group: https://connect.mayoclinic.org/group/heart-rhythm-conditions/

I hope this helps!

Wed, Jul 15 10:00am · Long QT Syndrome: Mayo Clinic Radio in Genetic Heart Rhythm Diseases

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Have you ever wondered what exactly long QT syndrome (LQTS) is?

“Long QT syndrome (LQTS) is a heart rhythm condition that can potentially cause fast, chaotic heartbeats. These rapid heartbeats might trigger you to suddenly faint. Some people with the condition have seizures. In some severe cases, LQTS can cause sudden death. “

Check out this video from 2017 when Dr. Michael Ackerman was featured on Mayo Clinic Radio where he discusses long QT syndrome and treatments.

Meet other people talking about genetic heart disorders and COVID-19 on Mayo Clinic Connect. Join the Heart Rhythm Conditions group to join the conversation, share experiences, ask questions, and discover your support network.

For up-to-date information, please follow Dr. Ackerman and the Windland Smith Rice Genetic Heart Rhythm Clinic on Twitter by clicking the links below.

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Wed, Jul 8 10:40am · Join Dr. Peter Schwartz and Dr. Ackerman for a Q&A session! in Genetic Heart Rhythm Diseases

FB Live 7_10 TwitterThis Friday, July 10th, at 11:20 AM CST, Dr. Peter Schwartz will join Dr. Ackerman for SADS Foundation’s weekly Facebook Live Q&A session! This will be a generic Q&A session so feel free to ask any of your questions regarding genetic heart rhythm disorders!

Dr. Schwartz is the Director of the Center for Cardiac Arrhythmias of Genetic Origin and of the Cardiovascular Genetics Laboratory at the Istituto Auxologico Italiano in Milan, Italy. His major areas of interest and expertise are long QT syndrome 9LQTS), risk stratification for sudden death, and the relationship between autonomic nervous system and life-threatening arrhythmias. In the 70s and 80s, he actually developed left cardiac sympathetic denervation (LCSD)!

To join the Facebook Live session, SADSLIVEjust go to the SADS Foundation’s Facebook page. On Friday, a new video will be available for you to join with the label “LIVE” in the top left-hand corner (illustrated to the right). You can also view previous Facebook Live Sessions under the Videos tab.

We hope you are able to join the Windland Smith Rice Sudden Death Genetic Heart Rhythm Clinic and the SADS Foundation this Friday!

Meet other people talking about genetic heart disorders on Mayo Clinic Connect. Join the Heart Rhythm Conditions group to join the conversation, share experiences, ask questions, and discover your support network.

For up-to-date information, please follow Dr. Ackerman and the Windland Smith Rice Genetic Heart Rhythm Clinic on Twitter by clicking the links below.

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Wed, Jun 24 1:51pm · What is an implantable cardioverter-defibrillator (ICD)? in Genetic Heart Rhythm Diseases

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What is an implantable cardioverter-defibrillator (ICD)?

An implantable cardioverter-defibrillator (ICD) is a small, battery-powered device surgically placed in a patient’s chest to monitor and detect irregular heartbeats (arrhythmias). If an ICD detects a dangerous heart rhythm, it delivers an electric shock via one or more wires (leads) connected to the heart to restore its regular rhythm.

How does an implantable cardioverter-defibrillator (ICD) work?

When an ICD detects a dangerous heart rhythm, it sends an electrical pulse to the heart. An ICD can be programmed by a physician for different things.

  1. Low-energy pacing: This is used when the ICD senses a mild disruption in a heart’s rhythm. It sends regular pulses to “pace” the heart and return it to normal. Most patients don’t feel anything when they are being paced.
  2. High-energy shock: This is for more serious heart rhythms or if the heart stops completely. A strong shock is delivered to restart the heart or return it to a normal rhythm. Because a patient’s heart isn’t working properly, they often pass out and are unconscious for a high-energy shock. It is possible for a patient to be awake. If the patient is awake, the shock can be painful; it is often described as feeling like a kick to the chest. Usually, only one shock is needed to restore a normal heartbeat. However, some patients can experience two or more shocks if their heartbeat doesn’t return to normal.

If an ICD needs to restore a normal heartbeat, whether with low-energy pacing or a high-energy shock, the heart rhythm is recorded. This is transmitted to a device specialist for interpretation and communicated to the patient’s physician.

Are there different kinds of implantable cardiovertS-ICDer-defibrillators (ICDs)?

Yes. Standard ICDs are surgically placed under the skin, usually just below the left collarbone, and one or more flexible leads run from the ICD through the veins to the heart (pictured above).

A subcutaneous ICD (S-ICD) is a newer type of ICD. An S-ICD is implanted under the skin at the side of the chest below the armpit (pictured right). Instead of having leads inserted into the heart, it is attached to one long electrode that runs along the patient’s breastbone. An S-ICD is less invasive than a traditional ICD.

Is an implantable cardioverter-defibrillator (ICD) different than a pacemaker?

Yes. A pacemaker is a small device implanted in a patient’s chest that is able to regulate a heartbeat by pacing. Unlike an ICD, a pacemaker is unable to shock a heart.

Are there risks involved with an implantable cardioverter-defibrillator (ICD)?

Yes. Risks during implantation are uncommon, but can include:

  • Infection at the implant site
  • Allergic reaction to the medications used during the procedure
  • Swelling, bleeding or bruising where your ICD was implanted
  • Damage to the vein where your ICD leads are placed
  • Bleeding around your heart, which can be life-threatening
  • Blood leaking through the heart valve where the ICD lead is placed
  • Collapsed lung (pneumothorax)

There is also the possibility that the device stops working properly or can malfunction. If the ICD missenses a heart rhythm, it can deliver a shock to the heart when a shock isn’t necessary. This is called an inappropriate shock. An inappropriate shock can also happen if a lead breaks in the heart. There are ways to turn off an ICD if there is a malfunction until the ICD can be repaired or replaced.

Does an implantable cardioverter-defibrillator (ICD) battery run out?

Yes. An ICD uses a lithium battery. Depending on how often the ICD is activated, the battery can last up to seven years. Patients with ICDs generally have six-month checkups where their battery level is checked. Once the battery runs low, the old generator is replaced with a new one during a minor procedure.

Who needs an implantable cardioverter-defibrillator (ICD)?

This is a hard question to answer and varies greatly depending on who you speak to. Generally, patients who have an ICD have survived a cardiac arrest or have fainted due to a confirmed, dangerous arrhythmia. For more information about who should and shouldn’t get an ICD, you can view these videos by Dr. Ackerman.

Cardiac Channelopathies and ICDs

“Most patients with a cardiac channelopathy do not need an ICD.”

Avoiding ICD Implantation in Primary Electrical Disease

Meet other people talking about genetic heart disorders and ICDs on Mayo Clinic Connect. Join the Heart Rhythm Conditions group to join the conversation, share experiences, ask questions, and discover your support network.

For up-to-date information, please follow Dr. Ackerman and the Windland Smith Rice Genetic Heart Rhythm Clinic on Twitter by clicking the links below.

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Mon, Jun 22 11:00am · THIS FRIDAY, join Dr. Ackerman and Dr. Charlie Berul for a special Q&A about ICDs and device therapies! in Genetic Heart Rhythm Diseases

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This Friday, June 26th, at 1:20 PM CST, Dr. Charlie Berul will join Dr. Ackerman for a special Facebook Live Q&A session about implantable cardioverter defibrillators (ICDs) and device therapy! If you’ve ever wanted to know what an ICD is or how one works, here’s your chance to ask the experts!

Dr. Berul is the division chief of Cardiology and co-director of the Children’s National Heart Insitute at Children’s National Hospital. He has over 150 publications in pediatric cardiology and is an acknowledged expert in the area of pediatric cardiac electrophysiology.

To join the Facebook Live session, SADSLIVEjust go to the SADS Foundation’s Facebook page. On Friday, a new video will be available for you to join with the label “LIVE” in the top left-hand corner (illustrated to the right). You can also view previous Facebook Live Sessions under the Videos tab.

We hope you are able to join the Windland Smith Rice Sudden Death Genetic Heart Rhythm Clinic and the SADS Foundation this Friday!

Meet other people talking about genetic heart disorders on Mayo Clinic Connect. Join the Heart Rhythm Conditions group to join the conversation, share experiences, ask questions, and discover your support network.

For up-to-date information, please follow Dr. Ackerman and the Windland Smith Rice Genetic Heart Rhythm Clinic on Twitter by clicking the links below.

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Thu, Jun 18 3:43pm · Patient Portal: Take care of your health. Anytime. Anywhere. in Genetic Heart Rhythm Diseases

PatientPortal

Do you have your Mayo Clinic Patient Portal set up, yet? If not, you need to! Your Patient Portal makes it easy to request and manage appointments, securely message your care team, view test results, and more!

First, it’s important to realize the difference between your Patient Portal, Patient Online Services, and the Mayo Clinic app as these terms can be confusing. The Patient Portal and the Patient Online Services are interchangeable terms referring to the ability to access your health information online.

The Mayo Clinic app is that and more! The Mayo Clinic app not only gives you access to your patient portal, but it also provides you with a daily dose of health news and practical advice. With the Mayo Clinic app, you can start and end your day with daily health insights from the experts!

  • Fitness: Practical workout advice for exercise newbies and active athletes
  • Healthy Eating: Meal plans, recipes, and tips from top dietitians and wellness chefs
  • Staying Healthy: The latest on prevention and self-care for your whole family

However, you do not need the Mayo Clinic app to access your Patient Portal. You can easily set up and access your Patient Portal online.

Here are just a few things you can do through your Patient Portal:

  • eCheck-In for an appointment and complete pre-appointment tasks
  • Send messages to and receive messages from your care team regarding questions and concerns
  • Look over test results and medical records
  • Review billing and insurance information and pay your bill
  • Use Express Care Online
  • Manage your prescriptions

See how the Mayo Clinic app puts better health in your pocket.

Meet other patients who are using their Patient Portal on Mayo Clinic Connect. Join the conversation, share experiences, ask questions, and discover your support network.

For up-to-date information, please follow Dr. Ackerman and the Windland Smith Rice Genetic Heart Rhythm Clinic on Twitter by clicking the links below.

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Tue, Jun 2 11:04am · It's National CPR and AED Awareness Week! in Genetic Heart Rhythm Diseases

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National CPR and AED Awareness Week June 1-7

 

Each year, June 1-7 is CPR and AED Awareness Week, highlighting how lives can be saved when everyone knows how to perform CPR and use an AED. Sudden cardiac death in children and adults with SADS conditions can be prevented if CPR and AEDs are used in time. CPR & AEDIt’s important to understand what YOU can do to save lives!

Pictured above is Gus! You can watch a video about Gus to learn more about him and how he helps train people to save lives here!

You can TRIPLE a victim’s chance of survival when you take these immediate lifesaving actions:

  1. Call 911 for emergency assistance
  2. Push as hard and fast as you can on the victim’s chest until someone comes to help
  3. Send someone to find an AED (automated external defibrillator), turn it on and follow the voice prompts

Don’t miss this Friday’s SADS Foundation’s Facebook Live event!

On June 5th, at 1:20 PM CST, on Facebook Live Dr. Ackerman, Richard Lamphier, RN, Program Manager of Project S.A.V.E, and Adrian Olmos, Director of Patient Advocacy for LifeSure, will talk about saving lives through teaching CPR and AED use. To tune in, just go to the SADS Foundation’s Facebook page and click videos!

National CPR and AED Awareness Week is sponsored by LifeSure. LifeSure specializes in delivering AEDs, and teaching customers how to use and take care of them. Check out their website to learn more and to order an AED for your home.

Check out the SADS Foundation’s website for facts about CPR and AEDs, information on how you can prevent sudden cardiac death in young people, and more!