"Heart to Hearth"
is a semi-annual newsletter designed to bring you information on the programs,
events, and philanthropic activities of the Sudden Arrhythmia Death Syndromes
(SADS) Foundation as well as medical updates on the Long QT Syndrome and other
related cardiac disorders.
SEE LAST
ISSUE.
| In the Media | |
| Sads Sixth Annual 'No Ball At All' | |
| Second Annual LQTS Week | |
| Supporting SADS: Stories that Inspire |
PRESIDENT
/ MEDICAL DIRECTOR'S REPORT
G. Michael Vincent, M.D.
We
have just completed a wonderful Second Annual National Long QT Syndrome Week.
This newsletter provides many details of the terrific activities that went on
throughout the United States. We are most grateful to all who worked so hard
to make the week such a great success.
Many of you have corresponded with and received help, encouragement and comfort from the tremendously dedicated staff of SADS. In this issue, you will have the chance to see them face to face, and put a face with the voice and spirit of Lynne, Robin and Christie.
In the "Scientific News" we discuss the automatic external defibrillator (AED). Many of you have contacted the Foundation regarding this device, asking about its possible use for you and your families. The information in the Scientific News is provided by Agilent Technologies.
I believe there are a number of circumstances in which this device might be used in genetic disorders of the heart rhythm such as long QT syndrome, Brugada syndrome and idiopathic ventricular fibrillation, in disorders of the heart muscle like cardiomyopathics, and for modest, blunt trauma to the chest over the heart, a condition known as Commotio Cordis. All of these conditions predispose affected person to sudden death due to cardiac arrhythmia known as ventricular fibrillation. The earlier the defibrillation is performed, the higher the chance of sucessful resuscitation. For patients who have had a cardiac arrest from one of the above conditions, or those who continue to have serious syncopal episodes in spite of medication treatment, the implantable defibrillator, or ICD, is the appropriate type of defibrillator therapy.
On two occasions early in the development of the AED device, I suggested to families that they purchase an AED, to have it available for their family members, and each responsible member learn how to operate the device. Since then, the device has been improved and the cost reduced, thus, it now seems reasonable to consider when it might be appropriate for individuals or families to acquire this device. There are certainly no guidelines, nor any consensus regarding this issue, and these represent only my preliminary thoughts:
1. An AED and someone trained in its use could be available at youth sporting events, especially if one or more of the participants are suspected or known to have one of the predisposing heart disorders. The AED could be provided by the event sponsor or by one of the families of a participating youth.
2. An AED could be purchased by a family for use in their home, while traveling and during away from home activities of affected family members. Family members could be trained in its usage, and as noted in the Scientific News discussion, there are built in controls to limit its misuse. I care for a number of families with five or more affected individuals in the nuclear family. Remembering that the cardiac events most commonly occur in pre-teen, teenage and young adult years, it makes sense to have an AED at home. The same reasoning when they are at hom, could certainly apply to a family with an affected parent and child.
3. I recognize that the AED would not be available to all individuals at all times. However, many cardiac events are precipitated by specific and somewhat predictable events, such as exercise, emotional stimulation, or sleep. Often the timing of these precipitators is somewhat predictable. For example, swimming is a well recognized risk factor for LQT1 patients, and sudden noises, which often occur at home, like an alarm clock, bell, etc, for LQT2 patients, and having the AED available at these times and places would be important.
4. Perhaps an AED could be available at schools attended by children with these conditions. The device could be loaned or donated by parents, PTA, or acquired by the school through other resources.
5. Between an AED at home and one at school, children with these conditions would have this potential life-saving resource available during the large majority of each 24 hours.
6. The cost of these devices is now about the same as a high-end home computer system.
Well, these are just a few thoughts. The SADS Foundation averages two calls per week regarding this issue, so it certainly seems appropriate to begin a broad dialogue on the topic.
SADS
IN THE MEDIA
Various news outlets
The Chicago Sun Times, Chicago IL
"Death
a heartbeat away"
Jim Ritter,
Nov. 5, 2000
www.suntimes.com
An informative article that provides a familial perspective on the short and long term effects of sudden death and long QT syndrome. The author's in-depth interviews of the extended family explores the impact of losing a healthy loved one suddenly and unexpectedly. Also examined is how the affected family members are living and coping with LQTS.
The Massachusetts
Eagle Tribune, MA
"A
quiet killer"
Will Courtney,
Nov. 5, 2000
www.eagletribune.com
This article documents the long QT syndrome in the Doyle family. The story goes back three years ago to 11 year old Jessica's sudden collapse at home, to her diagnosis of long QT syndrome, and through her current treatment. The article investigates the consequences of living with LQTS and the importance of getting the word out to prevent further tragedy.
Newsday
"Inherited
Heart-Rhythm Disorder Easily Overlooked"
Ridgely Ochs, Oct.
31, 2000
www.newsday.com
The story of one family's search for answers to their young son's unexplained health problems. After several unexplained seizures and fainting spells, the boy was finally diagnosed with the long QT syndrome. This article emphasizes the importance of affected families being tested, due to LQTS genetic origins. It also gives a brief overview of warning signs, symptoms, and treatment options.
Union News, Springfield
MA
"Death
struck without warning: Family hopes to spread word about syndrome"
Susan Fenelon Kerr, Oct. 2, 2000
An insightful article about the Larivee family and the sudden, tragic loss of their 13 year old daughter to what they found out months later was, long QT syndrome. This is an excellent read for families struggling to come to terms with the sudden loss of a child.
Burbank Leader, Burbank
CA
"Rare disorder haunts family"
Jenna Bordelon, Sept. 30, 2000
www.latimes.com/burbank
An in-depth look at the impact of losing a healthy young teenage child unexpectedly. The article tells the story of an active young man, his sudden death, and his family's six month search to find out why. The article concludes with an update of the family one year later and how their deceased son saved his younger brother's life by EKG screening and his diagnosis of LQTS.
The Ledger, Lakeland
FL
"Heart Problem Affects Children"
Robin Williams Adams, Sept 12, 2000
www.theledger.com
This article addresses the subject of children living with LQTS. Specifically, six year old Emily Warren's experience with long QT syndrome; being born in cardiac arrest, her subsequent diagnosis, and the automatic implanted defibrillator that regulates her heart rhythm. Also discussed is what it's like for a young child to live with an AICD.
The New York Times,
NY, National Report
"Researchers
Link SIDS To Disorder Of the Heart"
Denise Grady, July 27, 2000
www.nytimes.com
Ms. Grady's article explores Dr. Peter Schwartz's research finding of the first genetic evidence linking SIDS to long QT syndrome. Also covered is the debate about the feasibility and effectiveness of routinely screening newborns with EKG.
The Star Ledger,
NJ
"Danielle's death and a warning to parents"
Carman Juri, July 21, 2000
www.nj.com/essex
Ms. Juri writes a moving piece about the sudden death of Danielle Brender, a lovely, energetic 11 year old, to long QT syndrome. It illustrates her dedicated parents' tremendous efforts to educate their state about long QT syndrome as a way of honoring Danielle's life.
Fall River Herald
News, Fall River MA
"Sidelined...but still in the game"
Paula Kerr, May 11, 2000
A close look into the life of a young athlete living with LQTS. Michaela Gagne was the talented captain of her high school basketball team. The story chronicles this young woman's realization that she would no longer be able to play competitive sports. This is a great article for other young athletes living with LQTS.
Please
send a copy of any related articles into the
SADS office so we can refer others to them.
Thank you!
SADS SIXTH ANNUAL NO BALL AT ALL
It's that time of year again! Many of you have received your invitations already. If you would like to be added to the Dinner Committee, we can still send invitations and personal notes to those you'd like to "invite". This is a great way to involve your friends and family with the SADS Foundation. The No Ball At All's great successes are due to your help, time and support. We appreciate your annual involvement and efforts. Unlike many other charitable events, our No Ball is done very inexpensively and requires little staff time Ð leaving SADS the time to help more people. We hope you can "attend" this special event!
THE SECOND ANNUAL NATIONAL LQTS WEEK
September 25-30, 2000
U t a h A c t i v i t i e s
This year's Second Annual LQTS Week in Utah was fantastic! One of our goals was to spread awareness throughout the state. We extend much gratitude to our local volunteers for their amazing efforts in helping SADS make the week a tremendous success: Kayci, Darrell & Connie Ogden, Sherrie & Jerald Boseman, Helen Astill, The Kelly Family (Mike, Marty, Brian, & Megan), Penny Cline, Burma Skinner, and Genevieve Groesbeck. These dedicated volunteers, with a little help from SADS, were able to raise over $5,000!
The
week started off with a Family Fun Night Kick-Off Event at the Hollywood
Connection. The carnival-like recreation center generously provided discounted
passes to all who attended. LQTS families and their friends played miniature
golf, laser tag, arcade games, and roller skated. There was also an old fashioned
1950's diner with roller skating waitresses that served up all the traditional
American classics. The event was open to the public and everyone was met at
the door by the SADS Foundation and information about the long QT syndrome.
A great time was had by all who attended.
On Friday evening, we held the Second Annual Heal A Heart Benefit Dinner "Getting to the Heart of the Matter", at the Downtown Salt Lake Marriott Hotel. The evening began with a silent auction with wonderful items donated by local merchants, followed by a sumptuous dinner. Lynn B. Jorde, PhD, the keynote speaker, gave a fantastic presentation about genetic diagnosis and gene therapy. Following his lecture, Dr. Susan Etheridge and Dr. Michael Vincent conducted a very informative question and answer session with the audience. The event commenced with the announcement of auction winners. It was a lovely evening!
The
week concluded on Saturday morning with the Second Annual Walk With Heart
at Liberty Park. Many people came out to support the cause. Local LQTS families
and their friends gathered pledges to walk in honor of those living with LQTS
and in memory of those who lost their lives to LQTS. Each participant received
a t-shirt and medal for their efforts. Our lovely volunteers solicited delicious
snacks Ð doughnuts, pizza, popsicles and drinks, all of which were donated by
local businesses. After the walk, Megan Kelly and her cheerleading squad came
and dazzled the audience with terrific routines while the little ones had their
faces painted. It was fantastic!
September 25-30, 2000
Across the Country
The SADS Staff would like to take this opportunity to thank all the generous people who sent in donations to help fund The Second Annual National LQTS Week. With your financial help, we were able to send awareness packets and infomation to over 30 states. We have included a sample of the events that were held by some of our wonderful volunteers across the country. We appreciate all of your individual and group efforts to raise awareness about the long QT syndrome and support SADS. Thank you!
The
Swanson Family, Burbank, CA The Swanson family lost their wonderful son,
John to LQTS. They decided to turn their tragic loss into something that would
make John proud. During National LQTS Week, they raised awareness of this silent
killer in their community. The family distributed crucial information packets
on Long QT to teachers, coaches, and school nurses all over Burbank. They also
had an article published about their experience with LQTS in the Burbank Leader
on September 30th, 2000. "We hope that by exposing our tragic story we can help
others prevent and deal with the painful journey of being caught in an endless
battle with LQTS. John shall remain in our hearts forever and treasured memories
of him can only temporarily shield the pain of losing a great son, brother,
and best friend.", says John's mother.
Suebeth Brown, Medford, MA Suebeth was on a mission again this year during National LQTS Week. She and her four daughters distributed brochures and literature to the elementary, middle, and high schools in Medford. Suebeth made appointments with the principals, coaches, teachers, and nurses in her school district and gave them all LQTS information. Thank you for your tenacity, ladies!
Denise
& Michaela Gagne, Fall River, MA This incredible mother and daughter team
did a wonderful job contacting the media about National LQTS Week this year.
Michaela, 18 was diagnosed in April of this year and she and her mother, Denise,
have been busy spreading the word about long QT syndrome ever since. In September,
Denise contacted many school districts and Michaela was interviewed on the Mo-Show
and radio station, WHTB, describing her personal experience living with long
QT syndrome. In addition, Michaela gave a tremendous interview on a local television
news program. Ladies, your detemination and motivation is remarkable!
Martha Zaborowski, Germantown, TN Martha is an enthusiastic advocate for LQTS education and awareness. There is a strong history of LQTS in her family and she has put so much energy into educating others about it. During National LQTS Week, Martha was able to distribute long QT syndrome brochures and literature to Houston Middle and High Schools, the Germantown Methodist Hospital and to the coaches of some local boys baseball teams.
Elizabeth
Hermanson, Knife River, MN Elizabeth Hermanson was diagnosed with LQTS three
years ago. At 16, she is feeling terrific due to daily beta blockers and some
simple lifestyle changes. As part of National LQTS Week, Elizabeth sponsored
her Second Annual Benefit Dance at her high school, Two Harbors High. The event
followed their first home football game of this season. The dance had a terrific
turnout, her school mates were extremely supportive and generous. This year,
Elizabeth raised $765 and donated the proceeds to the American Heart Association
and the SADS Foundation. What an amazing young woman!
David Hayden, Indianapolis, IN David was busy during National LQTS Week circulating LQTS brochures and literature to the teachers, coaches, and counselors at Plainfield High School. Thank you, David!
Kayla
& Jessee Anderson, McCook, NE This year, Kayla and her sixteen year old
son, Jessee made a tremendous impact in Nebraska during LQTS Week. Kayla contacted
all the schools in their area. She was able to convince the principals from
the elementary, middle, and high schools to hold a mandatory meeting for all
school personnel about long QT syndrome. Kayla and Jessee, who is a sophomore
at McCook Senior High, distributed information packets and brochures throughout
the schools for these important meetings. Kayla also contacted three local radio
stations who ran PSAs (public service announcements). Jessee, who lives with
LQTS, spoke about his personal challenges and accomplishments despite his condition.
He is the lead singer and lead guitar in the classic rock and blues band "Tex
Uz Fludd". This extraordinary young man has spread awareness through his musical
talents and positive attitude about life. Jessee and Kayla, you are an inspiration!
Lisa Leithauser, Portland OR Lisa and her two young kids have LQTS. She is a tireless advocate for them and for other LQTS families. During this year's National LQTS Week, Lisa circulated LQTS information to local city schools, community centers and doctors' offices. Thank you for making more people aware, Lisa!
This exceptional week of remembrance and unity proved once again that LQTS education and awareness is absolutely achievable when people come together to share their stories with one another!
SUPPORTING
SADS: Stories that Inspire
Avi & Sharon Brender, Millburn NJ
This past spring, the Brenders unexpectedly lost their beloved daughter, Danielle.
Ever since they realized it was from Long QT Syndrome, they have been tireless
advocates for LQTS education and awareness. Their tremendous efforts resulted
in numerous stories printed in newspapers in their area including The Star Ledger,
The Item of Millburn and Short Hills,and The Millburn-Short Hills Independent
Press. The Brenders also arranged a Cardiac Arrhythmia Symposium at Newark Beth
Israel Hospital in New Jersey on October 26 of this year. The course directors
from the hospital selected recognized experts in their respective fields that
presented the most updated infomation about the long QT syndrome, out-of-hospital
resuscitation and Implantable Cardioverter Defibrillator technology. Medical
personnel from all the surrounding areas were invited. In a tribute to honor
the memory of Danielle, the Brenders spoke and shared the personal side of having
long QT syndrome in their family. Their dedication is making a huge impact!
Heather
Swart & Tom Tatarzewski, Largo FL Tom and Heather came up with a wonderful
idea about how to raise awareness about LQTS while doing what they love most.
Tom is a race car driver for Sunshine Speedway and races all over the state
10 months out of the year. Heather contacted SADS and asked if they could list
our toll free number and website on Tom's race car. With the enthusiastic support
of their track, Sunshine Speedway, and T.H.T Racing Mini Stock #78 they have
been able to spread the word. Everywhere they go, so does information about
LQTS. Their goal is: "to educate as many people as we possibly can... knowing
is half the battle." Long QT Syndrome has greatly affected both their lives.
They have both lost a loved one from LQTS and Heather is currently successfully
being treated for it. This dedicated couple are planning their upcoming wedding
this July. Congratulations, Heather and Tom!
The
Layton Family, Colorado Springs CO The Laytons hosted their third annual
"Oktoberfest" on September 9, 2000. One hundred young and old folks attended
and had a blast! They served up 150 brats with kaiser rolls, five gallons of sauerkraut,
7 gallons of German potato salad, 8 cases of beer and lots of pretzels. The
party began at 3:00 pm and finished up around midnight. Sally, Bill, Elise and
Emily were decked out in their usual German frocks, although the report is that
Bill's seems to be getting smaller and tighter. According to the family, many
of the attendees this year were new and very interested in learning more about
LQTS and the SADS Foundation. If you wilsh to attend or support their future
Oktoberfests, please feel free to write or email: Bill Layton, 3225 Brenner
Place, Colorado Springs, Co 80917 izigns@aol.com.
The Laytons generously donated the proceeds to SADS as they do every year. Thank
you so much, Laytons!
We express our heartfelt gratitude to all of those who gave so generously to SADS from February 1, 1999 - September 30, 2000.
|
OVER
$5000
|
$1,000
- $4,999
|
$500
- $999
|
| Brian
Abell Memorial Run Roland Levy Dr. Michael & D. Vincent |
Danielle
Brender Memorial Fund
David & Linda Brown Carlla & Paul Cato Jodi & Frank Hill Sharon Kramer Darrell & Connie Ogden Douglas & Angela Parker Kathleen Roska David & Carol Salisbury Burma Skinner Fred & Debbie Stucker Kenneth & Mary Thompson Dale & Victoria Turner |
Associated
Foods Brent & Bonnie Jean Beesley Deborah & David Boede Sherrie & Jerald Boseman Rod & Caroline Brady Richard Cagen St. Monica Catholic School Richard & Penny Cline Camille & Steve Coale Richard & Julia Crampton Marjorie & Fredrick Currey Blaine & Barbara Harmon Intermountain Health Care The LDS Foundation Alfred & Kathlyn McKnew Elaine O'Hara Rose & Raymond Parodi Merrie & David Peterson Linda & Bill Shockley Nanette Weinberg Wonderbread-Hostess Marge Zielinski |
|
$250
- $499
|
$100
- $249
|
$50
- $99
|
| Christopher
& Margaret Baker Christopher Chiames David & Kathy Clemmons John & Cathy Cradock Suzanne Dollman Karen Doust Bill & Janet Grube Susan Halpern Debbie & Kenneth Harrison Ray & Karen Hermanson Two Harbors High School George & Della James Michael & Marty Kelly Sally & Bill Layton Alan & Patricia London Robert & Caroline Madsen Paula & John Prucknicki Derrell & James Sears Virginia & Stoddard Katherine & Michael Timothy Beth & Alan Wiley |
Sylvia
Allen |
Susan &
Stuart Adams |
If we inadvertently misspelled or omitted a name, please let us know because we would like to include you in our next newsletter.
MATCHING GIFTS: A great way to double your support of SADS! Most companies in the US have developed a matching gifts program. It works like this Ð whatever amount you give to charity, the company will match, usually upto 100%. Since the SADS Foundation is a 501 (c)(3) organization, we are eligible for this match. All you need to do is ask your human resources or community affairs department for a matching gift form. Submit the form with your portion filled out, along with your gift. SADS will fill out the rest and provide all the necessary documentation, and your matched gift will be sent directly to SADS.
Desirae
Clark
McCammon, ID
I would like to nominate Desirae Clark for the Blue Ribbon Award. In June 1995 when she was 12 years old, she had her 3rd syncope episode. She had been swimming when she sank to the bottom of the pool for 7 minutes, it was another 7-8 minutes before help arrived. Dez was taken to Primary Children's Hospital in a helicopter and placed on a life support machine with a minimal chance of survival. After 23 days in the hospital, we came home with a miracle. Dez was diagnosed with LQTS. Subsequently, other family members have all been diagnosed and are now being treated.
Dez continues to be an honor student. She has struggled to accept her condition because she had always been so active in dance and gymnastics. She is now actively involved in Choir, Spanish Club and Seminary Council. Dez continues to be a great example to others. But what she is really nominated for is her courage and a strong determination to succeed! Dez is a winner for always doing her best in everything she tries. She plans to go to college and become a nurse or school teacher. We love her very much and continue to learn from her amazing strength!
Nominated
by Sherry Clark
Michaela
Gagne
Fall River, MA
Michaela
Gagne's phenomenal athletic career was cut short last year and yet this 18 year
old has an incredibly bright future. Last year, Michaela served as the captain
of the soccer, basketball and track teams while performing academically in the
top of her class. This Spring when she was diagnosed with LQTS, dashing her
dream of Division I soccer, her response was "it could be worse."
Just weeks after her diagnosis this intelligent, caring, committed young woman had dedicated herself to raising awareness about LQTS. Michaela's optimism is tremendous, "I try to concentrate on the things I have, not on what I don't have."
She dealt with the news by helping to coach. Her friends and former teammates are in awe of her grace and strength. Michaela is currently a freshman studying graphic arts at the U of Mass at Amherst. Throughout this ordeal, she has never stopped smiling, proving the true champion that this young woman is!
Nominated by Denise Gagne
Jimmy Scott
Bristol, DE
Jimmy Scott, a senior at Strath Haven High School, had a major life change last year when he was diagnosed with long QT syndrome. Jimmy was a seasoned hockey center for the Strath Haven Panthers who scored 20 goals and 17 assists for 37 points in a season! This never-say-die athlete does not give up. Since he cannot play center, he will be helping his teammates by coaching. His team and coach report that he keeps everyone positive and encouraging. They all admire his commitment to the team and their success.
His coach says, "It's a tough situation and he's making the most of it. It has affected us all because we know hockey is Jimmy's life and we're glad he is still around. He adds a lot to the team."
What an incredible young man!
Send in your Blue Ribbon Nominations to SADS! Please include a brief description
of why you are nominating your loved one and a photograph so they can be included
in the next newsletter!
CAMP
DEL CORAZON
Camp Del Corazon is a non-profit
ACA accredited camp specializing in children with heart disease or with a history
of heart disease. This aamazing program, founded by Lisa Knight, RN and Dr.
Kevin Shannon, provides a variety of fun and exciting activities for the kids
on scenic Catalina Island, just 20 miles off the coast of San Diego. The main
lodge contains a shaded dining terrace and the campers stay in rustic bunkhouses
for one week over Labor Day. All activities are lead by trained Activity Counselors
and supervised by Med Nurses. On site physicians not only oversee all medical
needs but are known to jump in and play and/or teach some of the activities
as well. All volunteer staff members attend training prior to working with the
kids.
This
past Labor Day, five kids with long QT syndrome had the incredible opportunity
to go to Camp Del Corazon. Michael, Kristen, Gregory, Nathen and Natalie received
sponsorship from a local chapter of the American Heart Association. They had
a blast! Activities they enjoyed during the week included a beach BBQ, disco
bingo, evening campfires, hiking, climbing, basketball, tennis, volleyball,
archery, golf, adventure games, kayaking, canoeing, swimming, snorkeling, tubing,
archery, arts and crafts. It was a tremendous experience for these kids!
Michael
Groesbeck had a "once-in-a-lifetime" experience when he was invited by the SADS
Foundation sponsored by the American Heart Association to attend the sixth session
of Camp Del Corazon. He flew into Los Angeles along with two other campers,
Natalie and Nathan Astill. They were picked up by their gracious volunteer hosts,
Bill Shell and Elizabeth Charuvastra who took wonderful care of them. Michael
reports that he loved "the food, kayaking, swimming, hiking, and costume carnival."
He also really enjoyed being with other kids that had been through many of the
same experiences he had. This was Michael's first trip on an airplane and a
boat- he didn't even get sick. His parents thought he looked liked a movie star
when he walked off the plane, with his sunglasses on and a big smile on his
face. "We are so grateful to the staff of Camp Del Corazon; Michael made so
many wonderful friends and had the time of his life!"
For more information about Camp Del Corazon, check out their website at www.campdelcorazon.org.
SCIENTIFIC
NEWS
AUTOMATED EXTERNAL DEFIBRILLATOR
Jamie Froman, Agilent Technologies
An AED (see illustration below) is a small, lightweight, easy-to-use first aid device that can deliver life-saving electrical current to restore a sudden cardiac arrest (SCA) victim's heart to a normal rhythm. When an AED is used, SCA survival rates can rise from under 5% to over 60%.
Today's AEDs are found in many public places like airports, casinos, office complexes, airplanes and schools are being equipped with the portable Automatic External Defibrillator (AED). They are easy to use because there are only a few simple steps to perform and voice commands tell you when to perform each one.
Diagrams show you where to place pads on the victim's chest. The AED automatically assesses the victim's condition and determines whether or not it is necessary to administer a shock. If a lifesaving shock is needed, the AED tells you to push the flashing orange button. While you can learn to use the AED very quickly, it is also important to have CPR training in order to maximize the effective use of the AED.
AEDs like Agilent's Heartstream FR2 do not require constant maintenance because it performs daily automated self-checks. A blinking light verifies that the AED is ready to use and the device "chirps" whenever it needs a new battery. However, you will need to replace the defibrillator pads after each use, or every 18 months.
GEORGETOWN STUDY
SADS is collaborating with a team of researchers working with Dr. Raymond Woosley, Georgetown University, Washington, DC as part of their research, they are developing an international registry for MEDICATION-INDUCED long QT syndrome, and are attempting to develop an inexpensive rapid test for detecting known mutations underlying all types of long QT syndrome.
You may wish to contact Dr. Woosley's laboratory to see if you might fit into a research project involving genetic testing. If you or a family member have been shown by genetic testing to have such a mutation, you may be able to help with this research project.
Dr. Woosley's website is www.qtdrugs.org or you can reach his lab by phone at (202) 784-4113, (202) 687-1064, or toll free (888) 826-3847. An additional website maintained by Dr. Woosley's team is www.torsades.org which lists medications identified in the medical literature and/or FDA approved labeling as having potential to prolong the QT interval and/or cause torsades de pointes.
AED RELATED
SCIENTIFIC ARTICLES
Multicenter, Randomized,
Controlled Trial of 150-J Biphasic Shocks Compared With 200- to 360-J Monophasic
Shocks in the Resuscitation of Out-of-Hospital Cardiac Arrest Victims
Schneider et al.
Circulation Vol.102, Oct. 2000 pp. 1780-1787
Electrocardiographic
evaluationof defibrillation shocks delivered to out-of-hospital sudden cardiac
arrest patients
Gliner & White
Resuscitation 41, 1999 pp. 133-144
Comparison of Naive Sixth-Grade
Children With Trained Professional in the Use of an Automated External Defibrillator
Gundry et al.
Circulation Vol. 100, Oct 1999 pp. 1703-1707
The Effects of Biphasic
and Conventional Monophasic Defibrillation on Postresuscitation Myocardial Function
Tang et al.
Journal of the American College of Cardiology Vol. 34, No. 3 September 1999
Effect of Ventricular
Shock Strength on Cardiac Hemodynamics
Tokano, et al.
Journal of Cardiovascular Electrophysiology, Vol. 9, No. 8, August 1998
Drugs That Prolong the QT
Interval and/or Induce Torsades de Pointes
Compiled by Raymond L. Woosley, MD, Ph.D.
Updated October 17, 2000
This list is maintained by Raymond L Woosley, MD, PhD in the Department of Pharmacology at Georgetown University. Suggested additions, deletions and references are most welcome; the list has benefited immensely from the input of practicing physicians and other researchers in the field. The content of this table is for public use, free of charge and for information only. It is not intended to be used in any other manner. The author disclaims any liability, loss, injury, or damage incurred as a consequence directly or indirectly. The information presented is intended as general health information and as an educational tool. Only a physician , pharmacist, or other health professional should advise a patient on medical issues and should do so using a medical history and other factors identified and documented as part of the health professional/patient relationship.
To receive a free laminated pocket-sized version of this information, visit www.Torsades.org.
See www.QTdrugs.org • www.Torsades.org • Drugs to Avoid List
The Sudden Arrhythmia Death Syndrome Foundation (SADS)
Heart to Hearth is a publication of the SADS Foundation, a not-for-profit public charitable foundation. The primary purpose of this publication is for general information only and is not to be used as medical advice, diagnoses or treatment. Readers are reminded to seek the advice of their respective physicians.
If you appreciate the Heart to Hearth Newsletter, send your comments to Christie Machan at the SADS Foundation and indicate you saw the newsletter on the Internet. This will help us to know what medium to use to best contact people. If you are not on our mailing list to receive this and other information about the SADS Foundation and the Long QT syndrome, please call the Foundation on our 1-800-stop-sad toll free number and ask to be put on the mailing list. If the Internet seems to be the most effective means of communication, we will attempt to put more of our materials here.
Best wishes and good luck.
G. Michael Vincent, M.D.
SADS Staff
Robin
Brown
Christie Machan
Lynne Godfrey
SADS GOALS
Awareness to establish a broad national volunteer base and provide them with the educational materials to be distributed throughout their communities.
Education to educate the general public and health care professionals in order to promote early diagnosis and treatment of cardiac arrhythmias.
Family Support to facilitate communication between affected families through a national networking support program fostering knowledge and healing.
Patient Support to refer patients to qualified, knowledgable Cardiologists and/or Electrophysiologists.
Physician Education to provide diagnostic guidelines and up-to-date clinical findings about LQTS and other cardiac arrhythmias to the medical community.
Research to facilitate and support national and international related research efforts.