SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

Shari,

I had a sudden cardiac arrest 7 weeks ago, and I went to see Dr. Ackerman about 10 days after the arrest. I am 29 years old and had an ICD implanted two days after the arrest. Dr. Ackerman was really fantastic. He spent nearly two hours with my family and me. We are going through genetic testing now to determine whether or not I have long qt. Dr. Ackerman was very reassuring for me. I would recommend going to see him if you have the opportunity.

Hello,

My daughter(12), has recently been diagnosed with Long QT syndrome. We will be having the blood test to determine the type. Her doctor has suggested she stop all high risk sports due to her QT interval being in the upper 500s. The very frustrating thing for us is that our daughter is very athletic, loves sports, received the presidential fitness award from her school, and now is being told to stop those activities she enjoys so much. I do not wish to play russian roulette but I also want my daughter to love her life and live it to the fullest. I know that sounds idiotic considering the circumstances, but I'm still going through the motions of all of this. She is very angry and upset. She does not want to stop playing sports, she doesn't want to be labeled, and this is very hard for her. She thinks, like all kids her age that she is invincible. I admire and love her strong spirit but again, I don't want to gamble. She is on medication and we're looking into purchasing an AED. Any recommendations?Would also like to know what sports are considered acceptable?

Hello,
My 15 year old son had a sudden cardiac arrest a few weeks ago, while at his first cross country practice for the season. Fortunately for us, our school had an AED and saved his life. He was diagnosed with Brugada syndrome and had an ICD implanted by the end of that week.
As parents, we also struggle with the emotions of gratefulness that he is still with us here today. But our hearts are broken as he is now forced to give up the sports that he loves. He also had been playing ice hockey since he was 6 years old and will never be playing again. Although, he is still supporting the cross country team by attending meets, it is very emotional for each of us. Being told that golf and bowling are okay just doesn't seem to cut it!!
He has decided to become an ice hockey official, which will still keep him involved in the sport at some level. Maybe your daughter would consider becoming inolved as helping to coach or become an official in the sports that she excelled at. This way she would be giving to others, while at the same time filling a void. Words cannot express enough the frustration our kids are going through. Blessings to all.
Cindy

I recieved your bulletin on your 12 year old daughter and it sounded a lot like what my daughter has gone through. I would like to have my daughter be able to communicate with your daughter about what she has gone through to help you and your daughter. My email is This e-mail address is being protected from spam bots, you need JavaScript enabled to view it please feel free to email me.

I have a son who is 14 years old and has an ICD like your son and was really involved in sports. He has a difficult time with the realization of his condition, and would really use some support between similar circumstances. He was very involved in baseball, an very good at every sport he participated in. Having said that as a parent it would be nice to be able to communicate (or have them be able) to communicate their frustrations. Please feel free to email me @ This e-mail address is being protected from spam bots, you need JavaScript enabled to view it

Hello,

I purchased my Phillips Heartstart AED on-line at AllegroMedical.com. The Customer Service staff was wonderful and very helpful. I am not sure if insurance will cover it. I purchased it in a hurry and did not try to put it through insurance. It cost approx. $1200.00. It is very user friendly. Hope this helps.