Supporting families. Saving Lives.
http://www.StopSADS.org
Warning Signs
SADS Warning Signs:
*Family history of unexpected, unexplained sudden death in a young person under age 40 including drowning suddenly.
*Fainting (syncope) or seizure during exercise excitement or startle (i.e. alarm clock).
*Consistent or unusual chest pain and/or shortness of breath during exercise.
*Consistent or unusual chest pain and/or shortness of breath during exercise.
SADS Foundation Mission:
To save the lives and support the families of children and young adults who are genetically predisposed to sudden death due to heart rhythm abnormalities.
In the beginning:
In 1991, a group of scientists head by Drs. Michael Vincent and Mark Keating at the University of Utah isolated the chromosomal location for the first gene known to cause the Long QT Syndrome. This was a landmark discovery in the study of unexplained sudden death in the young. This breakthrough confirmed suspicions that LQTS was more common than once believed.
The SADS Foundation was established in 1991 by Dr. Michael Vincent and his colleagues at the University of Utah. Dr. Vincent believed that the SADS Foundation was a ‘better way’ to increase awareness about Long QT and save more young lives.
For more than 19 years, the SADS Foundation has provided information, support and hpe to thousands of families with children living with the threat of unexpected, sudden death and is a leader in education, research and advocacy for families and children with genetic heart arrhythmias that can cause sudden death.
Facts About Sudden Cardiac Death:
*Each year in the United States, approximately 4,000 children and young adults die suddenly and unexpectedly due to cardiac arrhythmias. Most of these deaths are due to hereditary conditions.
*These conditions include Long QT Syndrome (LQTS) Arrhymogenic Right Ventricular Dysplasia (ARVD), Brugada Syndrome, Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT) and others.
*10-12% of SIDS deaths are due to Long QT Syndrome.
*Long QT Syndrome is at least three to four times more common than childhood leukemia in the United States.
*Most cardiac arrhythmias and structural defects that may cause sudden in the young are identifiable and treatable. With treatment, people with these conditions often have normal lifespans and lifestyles.
References for the above are available online.
What we do:
Innovative Programs:
Patient/Family Support: provides information, resources and consultation to assist patients and their families so they can make informed medical decisions in order to help them live and thrive with heart rhythm conditions.
Awareness: increase the general public’s knowledge of the warning signs of SADS conditions through distribution of materials, our website, conferences and health fairs.
Advocacy and Research: advocate for increased research for genetic arrhythmias, screening and treatment improvements.
Medical Professional Outreach: provide information and tools to assist health professionals (especially focused on primary care) to recognize, diagnose and treat SADS conditions.
SADS Awareness Campaign: annual outreach campaign to communities and the media to increase awareness of the warning signs of SADS condition.
Family Pedigree Project: help SADS families complete their family pedigree to identify others at risk.
SADS Safe Schools: prepare and distribute materials to school nurses, staff, teachers and coaches to keep SADS children safe at school.
Volunteers: utilize volunteers across the country for outreach, education and advocacy campaign to maximize our resources and save lives.
Disclaimer: This information was taken directly from the SADS Foundation pamphlet and I give them full credit for the information. Please call the above numbers or email them directly for more information on their programs.
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