It was another devastating blow for the family of Dr. Lauren Gerber, shown above with her two sons Jacob and Zachary. Her first cousin, Rebecca, had called to tell her that Jason, Rebecca's 25-year-old brother had died in his sleep. He had just completed law school with honors. How could such a healthy young man just die -- of unknown causes?

As the two distraught cousins spoke, they began to recount other tragic losses in their family. Rebecca and Jason's father had died at age 35. He was the brother of Lauren's mother. Their grandfather had died at age 52 of what was believed to be a heart attack. One of their cousins, a cardiac surgeon in apparently good health, also died at age 35.

Several other family members had suffered cardiac events that required either defibrillation or beta blocker medication. A familial pattern was emerging, and Lauren and Rebecca knew they had to begin their own investigation of what appeared to be a hidden cardiac killer in their family.

At the time, Lauren was an intern at N.Y.U. Medical Center, working on her doctorate, and Rebecca was finishing medical school in Miami, Florida. With both cousins training in medical teaching hospitals, they were ironically in "the right place at the right time" to search for answers.

Lauren saw Dr Brian O'Connor, an electrophysiologist at N.Y.U., who made a diagnosis of Long QT and prescribed a regimen of beta blocker therapy which she did not tolerate well. Rebecca, in the meantime, went to see one of her professors, Dr. Robert J. Myerburg, and she too was diagnosed with LQTS.

It was about that time that Lauren moved to Chicago with her two sons and took a job as a School Psychologist. She continued to explore alternative treatments for Long QT, and with the support and encouragement of a dear friend, Jason Brett, she went to see Dr. David Cannorn for a second opinion. He concurred in the diagnosis and introduced the possibility of an implanted defibrillator as one course of treatment.

Ironically, Jason's wife had died three years before of sudden cardiac death, leaving him with two daughters. His knowledge and experience proved to be invaluable to Lauren.

On February 28, 1998, Lauren suffered a cardiac event while at work and was taken by ambulance to Evanston Hospital, where an electrophysiologist implanted a defibrillator. Across the continent in Florida, Rebecca was undergoing a parallel experience. In March 1998, just two weeks after Lauren's surgery, Rebecca also suffered a cardiac event and Dr. Myerburg implanted her defibrillator. They were now not just first cousins, but also "defibrillator sisters".

Before Lauren and Rebecca's search for the hidden truths, their family was never able to point to the etiology of sudden cardiac deaths. Today, they are both protected by their internal bodyguards -- their defibrillators. They continue their search to benefit their families. Blood samples have been sent to Dr. Jeff Towbin at Baylor University and while still awaiting results, they have found many answers to the unknowns. Long QT Syndrome does not need to be a silent killer. Their family is extremely dose, loving and hopeful for the future. The depth of their caring for each other has grown over the generations due in part to a silent disease that they could not recognize or anticipate. Today they realize that even without obvious overt signs, they carry a disease that must be acknowledged and addressed in a proactive way for generations to come.

Footnote: by Lauren Gerber
I was honored to be asked by my dear and supportive friend, Doris Goldman to share my story for this newsletter. Doris has shared with me her personal tragedies and her own means of coping and survival. I am grateful that she came into my life when I needed guidance and loving support. Although I did not know who to turn to... she found me. I would also like to give special thanks to Dr. David Cannom, who evaluated me in California, confirming my diagnosis of Long QT Syndrome. He is a special man who rises far above the call of his medical duty. He is not only a brilliant cardiologist, but also a humanitarian who gave me expert information laden with support. Doris and David are what I needed to survive this deadly disease. C.A.R.E. is clearly the perfect acronym for an organization which helps families striving to prevent sudden cardiac death.