Implications of Hypertrophic Cardiomyopathy Transmitted by Sperm Donation

March 5th, 2010

According to an October 21st, 2009 “brief report” in the Journal of American Medical Association (JAMA), a 23 year old male who had no personal knowledge of underlying heart disease repeatedly donated sperm over a 2-year period (1990-1991).  This donor underwent standard testing that was negative for infectious diseases.

JAMA goes on to say “several years later, an offspring was diagnosed with HCH, which triggered the notification to all known recipients of this donor’s sperm that an inherited form of heart disease could have been transmitted to their children.”  As a result, genetic testing was offered first to the donor and later to the offspring.

Twenty-two children are known to have been products of this sperm donation.  Of these, 16 have been tested for the Arg169Gly mutation (associated with HCM) and 8 were positive.  Eight other offsprings were tested and were negative.

However, 3 of these “positive” offspring had major health problems:  2 year old offspring died of HCM with intractable heart failure, 2 offspring had massive LV hypertrophy, as well as the donor with extensive myocardial fibrosis. 

The donor also had two children conceived with his wife, one of these children tested positive for HCM. 

The comment by doctors working on this case study remarked that they are aware of only one other documented instance in which a genetic disease was transmitted to an offsping by sperm donation.

While the FDA has regulated donor eligibility and sperm banks for compliance with the guidelines offered by the American Society of Reproductive Medicine and the American Association of Tissue Banks, its regulations for sperm banks have focused disproportionately on communicable diseases and not toward the detection of inherited cardiovascular diseases. 

Available screening guidelines rely largely on obtaining a family history which is a strategy not likely to be particularly effective for those with HCM.  HCM rarely has symptoms.

The answer from this group of physicians:  Provide the public with information about this issue and instituting the possibility of screening strategies for donors to prevent future undesirable propatigation of genetic cardiovascular diseases such as HCM.

Enlarged heart killed Jeron Lewis

February 15th, 2010

According to Daviess County (Ky.) coroner Bob Howe, University of Southern Indiana basketball player, Jeron Lewis suffered from hypertrophic cardiomyopathy (HCM).  Lewis, a senior, collapsed during a game Jauary 14th at Kentucky Wesleyan.  Sadly, the 21-year-old suffered sudden cardiac arrest brought on by HCM.

HCM, or an enlarged heart, has been blamed in a number of deaths involving athletes.  Another elite athlete, Gaines Adams, defensive end with the Chicago Bears died January 17th, also, of an enlarged heart caused by HCM. 

Championship Hearts Foundation is offering a free heart screening in Austin, Texas this Saturday, February 20th from 8:00 am to 12:00 noon at Heart Hospital of Austin, 3801 N. Lamar Blvd., Austin, Texas.  No appointments necessary, first come, first serve.

Cardiac screening and New Jersey student athletes

February 9th, 2010

Greg Tufaro, staff writer for mycentraljersey.com details the deaths of two popular Middlesex County high school students due to Hypertrophic Cardiomyopathy (HCM).  Mr. Tufaro questions the fact that unlike their professional counterparts, scholastic student-athletes are not required to submit to cardiac screening.

“The NFL, NBA, and NHL provide cardiac screening in the form of an electrocardiogram and/or echocardiogram for all players, but high school sports programs nationwide require only that student-athletes complete  a pre-participation form and undergo an annual physical” states Mr. Tufaro.

The families of two 17 year old seniors from Edison and South Brunswick who collapsed and died during track practice and while playing in a recreation basketball game, respectively, said they believe cardiac screening could have prevented both boy’s deaths. 

This article went on to state that there is no screening programs in place, except one in Texas, Championship Hearts Foundation. 

New Jersey is concerned enough to form a Student-Athlete Cardiac Screening Task Force to promote educational programs to help deal with these issues and concerns of HCM and other heart anomalies.

Two deaths in one week – tragic news in sports world

January 27th, 2010

The final autopsies are not back on S. Indiana basketball player, Jeron Lewis, age 21, and Chicago Bears defensive end, Gaines Adams, age 26.  Both are suspected of having an “enlarged” heart.  An enlarged heart can be the result of having Hypertrophic Cardiomyopathy (HCM).

While we are not sure if  HCM is to blame for these two athletes, both are suspect for having HCM.  These two deaths are  a vital reminder that this deadly disease often goes undetected.  HCM is a genetic disease which results in a thickening of the heart muscle and is the leading cause of sudden death in children and young adults.  It accounts for 40 percent of all deaths on the athletic playing fields across the country. 

University of Southern Indiana spokesman Dan McDonnell said he wasn’t aware of any preexisting medical conditions that could have contributed to Jeron’s death.

The Bears franchise is quoted as saying “we are stunned and saddened by the news of Gaines’ passing”.  “Our prayers are with his family during this difficult time.”

Estimated to affect one in 500 Americans, HCM can be detected and treated allowing patients to live long lives.  High school, college and professional athletes should all have comprehensive cardiac exams to ensure they have healthy hearts free from HCM. 

Adams and Lewis are in a subset of those at higher risk for sudden cardiac arrest from HCM as they were both African American males, this population represents 50% of all those who die from HCM in the athletic spectrum (according to the Hypertrophic Cardiomyopathy Association- www.4HCM.org). 

Championship Hearts Foundation provides free heart screenings for Central Texas athletes  to screen for HCM.   Please check our website under “upcoming heart screenings” for a future date and time these events.  The screenings are on a first-come, first-serve basis, no reservations required.

New Study by Johns Hopkins School of Medicine

January 11th, 2010

A recent story published in the LA Times (Jeannine Stein, 11/23/09) suggests that comprehensive screenings could be the answer to the tragedy of a young athlete dying of an undiagnosed heart condition.  Health histories and screenings were conducted on 134 Maryland high school athletes attending the state track and field championships in 2008. 

Dr. Aurelio Pinheiro of the the Johns Hopkins School of medicine and his colleagues were specifically looking for cardiac abnormalities such as hypertrophic cardiomyopathy, a thickening of the heart muscle that makes it difficult for the heart to pump blood.

Of the 134 athletes tested (tests included an echocardiogram, an EKG, blood pressure, and health history), abnormalities of some kind were found in 36 athletes.  Of those 36, 22 were found via EKG alone and five by both tests. 

Dr. Pinheiro states that these findings argue for routine testing of athletes, suggesting that such testing should be comprehensive and not reliant on just an EKG or an echocardiogram.  

This study was presented at the American Heart Association’s annual scientific sessions conference in Orlando, Florida in November, 2009.

HCM and Bulimia

December 16th, 2009

When we hear of sudden cardiac arrest, we rarely think of bulimia.  However, Hypertrophic Cardiomyopathy and bulimia can be a deadly combination.  Read this heartbreaking story of “Sara” (4HCM.org) written by her mother, Miv London, PhD, University of Vermont Counseling Center. 

“On August 3, 2006, my daughter, Sara was exercising on the treadmill in the basement of my home, when she collapsed and died of sudden cardiac arrest.  Sara was 19 years old.  She had been diagnosed with hypertrophic cardiomyopathy at age 12.  She had been under the regular care of a cardiologist, and over the years had displayed neither symptoms nor risk factors for sudden death.  However, Sara did have a risk factor that most likely contributed to her death.  Sara had an eating disorder.  In her early teens, she had restricted her food intake and lost a significant amount of weight.  More disturbing, at age 16, she began to binge and purge.  She struggled on and off with bulimia for the years leading up to her death.  The most common causes of death for anorexics are starvation, cardiac complications, and suicide.  Bulimia is also dangerous, though  far less lethal in the general population.  However, for HCM patients, the greatest danger of bulimia is dehydration due to frequent vomiting, and subsequent electrolyte imbalance, which can lead to life-threatening arrhythmias.  This is likely what caused Sara’s death.”

Resources for education, information, and advice: www.edreferral.com; www.aafp.org; www.helpguide.org

Zoe’s Kitchen and Championship Hearts

December 8th, 2009

Zoe’s Kitchen, Arboretum, (next to Gap Kids and Renaissance Hotel) has offered to help us raise money and awareness about our Foundation by offering a $1.00, $5.00 and $10.00 paper “angel” to hang in their restaurant with your name on it.  Make any donation and get a reusable travel cup for $0.99 – FREE REFILLS!

Zoe’s Kitchen offers recipes created from scratch by Zoe Cassimus’ real life kitchen -  a place livened by her love of family and warm hospitality.  Zoe’s offerings are simple, close-to-the-garden ingredients and incredibly delicious!

Championship Hearts Foundation has experienced some of these offerings firsthand.  We have used Zoe’s for our catering needs and our Board Members loved it!  Especially the chocolate cake – just like Grandma’s!

Thank you, Zoe’s Kitchen, for sharing the season spirit by supporting our mission – to reduce cardiovascular disease by offering free heart screenings to student athletes, AED Awareness, and Austin Medical Explorer Post Program.

Matt Nader Story on CNN Health News

December 1st, 2009

Titled “Heart scare put lives on new course” written by Madison Park with CNN, dated 12/1/09 – Matt Nader describes the night in 2006 that he “felt as if he had swallowed a grenade.”  Nader suffered from ventricular fibrillation on that balmy night during a high school football game. 

Ventricular fibrillation is really “a muscle twitch” that caused the young lineman to collapse.  His heart stopped pumping.  He was revived on the field, taken to the hospital where a miniature internal defibrillator was implanted into his chest.  That was the good news – he could control the “twitch”; however, his football career was over.  Nader and his family together had to chart a new course for him.  You see, he had already committed and received a football scholarship to University of Texas at Austin.  And that dream of playing in the NFL was gone.  The University of Texas honored his scholarship and he is cheering and helping them with their amazing season – but from the sidelines. 

Matt hopes to get into coaching and sports broadcasting  in the future.  He is also an advocate for legislation that requires AED’s to be available at every Texas school and he also volunteers with the American Heart Association.  Matt and his family have adjusted to their new course, Matt has resigned himself to the fact that there is more to life than football and we are all the better for that. 

To read the entire article, go to:http://www.cnn.com/2009/HEALTH/12/01/changes.heart.lifestyle/index.html

Note:  Matt Nader generously donates his time for Championship Hearts Foundation as well.  He is an amazing spokesperson for AED placement and training.

November 20th, 2009

Cardiac Deaths Increase Among the Young

According to the CDC, sudden cardiac death (SCD), typically considered a danger mainly to the middle-aged, showed a 10% increase in persons between the ages of 15 and 34 over the last decade.  AND the SCD death rate increased by 30% in young women.  And alarmingly, death rates were also higher among young African-Americans than whites.  All this was reported at the American Heart Association’s 41st Annual Conference on Cardiovascular Disease Epidemiology and Prevention, in San Antonio, Texas. 

CDC Director Jeffrey Koplan, M.D., M.P.H. stated “we can’t fully explain this increase in SCD among young people, particulary women.  Perhaps among other things, poor recognition of heart events in younger patients and delayed application of cardiopulmonary resuscitation or defibrillation may also be contributing to this increase.”

Dr. Koplan goes on to say that “families with a history of early heart disease or sudden cardiac death should talk to their doctors about screening younger family members.”  Early identification of risk and prompt attention when signs of heart distress are recognized could help reduce SCD in peoples ages 15-34, according to the CDC.

To see a full exerpt of this information go to: About.com-US Government Info

SUDDEN DEATH in the Young

November 19th, 2009

According to James Davis, RN, MA, EMT-P with the Columbus Ohio Division of Fire and a flight RN for Medflight of Ohio, very seldom do EMT or first responders suspect heart issues in young athletes who are being resusitated.  They suspect that their friends are lying about drug/alcohol use possibilities because a young, healthy- appearing kid should not be having cardiac problems.  However, in the US some 200-300 young people die each year from cardiovascular events during physical exercise.  What causes a healthy child, teen or young adult to suffer fatal cardiac arrest?  Hypertrophic Cardiomyopathy, Commotio Cordis, Coronary Anomalies, Infectious Causes, Long QT Syndrome and Brugada, Bronchospasm.   Medications such as ephedrine can be the culprit, as well as cocaine. 

This article goes on to say how important it is that we educate our schools, coaches, parents, sports clubs and athletes themselves that sudden death can occur in even the healthiest apprearing athletes.  AED’s need to be at sporting events, CPR trained personnel, as well as access to advanced care.  Athletes need to be encouraged to report problems without fear of penalty from coaches and parents.  Filling out a detailed medical history is the first step, then, depending on any concerns, a 12-lead EKG should be used as a part of the physical exam.  To read more, click on the link below:

SUDDEN DEATH in the YOUNG