This letter was written by SADS volunteer, Janet Riepe, who lost her son Evan suddenly and unexpectedly to a SADS condition two years ago.  We hope this letter encourages others to write to their editors about how SADS has affected their lives and why their community needs to be aware of the warning signs.  Contact Adrienne for help getting started.

Here's Janet's letter:

Dear Editor,
I am writing to you today to inform you and your readers about sudden death in children and young adults.  It has been two years since our son Evan died suddenly and unexpectedly.  Evan was a very healthy teen and had a pretty much normal day.   A complete autopsy was performed and there was still no diagnosis or explanation for the cause of his death.   The most likely cause we were told is SADS, Sudden Arrhythmia Death Syndrome.  SADS conditions are genetic heart rhythm abnormalities that can cause sudden death in young, apparently healthy people – who are undiagnosed.  Since the loss of our son, I have learned much about SADS from numerous Dr’s visits for myself and other family members as well as doing some of my own research online.

In SADS conditions the electrical systems of the heart are not working properly so there is an abnormal rhythm that occurs.  If the abnormal rhythm does not convert back to normal then it can lead to syncope (fainting), seizures, cardiac arrest, and/or sudden death.  If a person collapses it is possible to shock the heart back into a normal rhythm with an AED (defibrillator) and CPR should be administered.  Early defibrillation of cardiac arrest victims is essential.  Survival can be as high as 90 percent if treatment such as CPR and/or an AED is initiated within the first 4-6 minutes after sudden cardiac arrest.  The rate decreases by 10 percent each minute longer.  

These conditions can be treated and deaths can be prevented.  Warning signs are:  Family history of unexpected, unexplained sudden death under age 40; fainting or seizures during exercise, excitement or being startled (the person can be in a resting state as well); consistent or unusual chest pain and/or shortness of breath during exercise; heart palpitations; and dizzy or light-headedness.  Unfortunately there are many cases where there are no previous warning signs at all.

It is estimated that over half of the 4,000 SADS deaths each year of children, teens or young adults had one to the top two warning signs:  1)family history-of a SADS diagnosis or sudden unexplained death of a family member (usually undiagnosed or misdiagnosed and untreated),  2)fainting. 

One simple and easy test that I encourage your readers to do is to request an EKG on their child or teen especially if the child is very active and into competitive sports, if the child displays any of the warning signs, or if there is a family history of young (under age 40) sudden unexplained death.  It is a very easy test to do that can be performed in most Dr’s offices and causes absolutely no pain or discomfort to the patient.  If there is even the slightest variation or abnormality in the EKG reading, ask that it be reviewed by an elctrophysiologist (a Dr that specializes in the electrical rhythms of the heart).  Enroll in a CPR class, it only takes a couple of hours and could save a person’s life.  You can even learn CPR by watching a short video on www.StopSADS.org/Library/Videos. Parents can talk to their child about the warning signs of SADS and to take them serious no matter how great or small.  Parents can also talk to their child’s school to see if there is a plan set in place for when a student suddenly collapses in the classroom or during an athletic event.  Make sure an AED (defibrillator) is available in the classroom AND on the court or playing field.  If not they could discuss with the school how to help make one available.  Schools are a place in the community in which many citizens come together for meetings, a wide variety of activities, to watch athletic events, etc – ensuring your local school has the proper emergency response plan will not only protect students, but also visitors to that school.  The quicker the response time is the better chance of survival.

Evan was an active, healthy, teen age boy.  He was a competitive athlete, a good student and always full of laughter and smiles.  Prior to his death he never displayed any of the warning signs or symptoms of a SADS condition at least that we were aware of.  I have read many other SADS stories just like his.  I don’t know if knowledge of SADS conditions prior to his death would have made a difference for Evan, but I hope and pray that this information will be helpful for others and possibly save another young man’s (young lady’s) life.

Sincerely,
Janet Riepe

(Some of the information was taken from the SADS Foundation website.  If you would like to know more about SADS go to www.stopsads.org)


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