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HEADLINE: Death of teenager spotlights rare heart ailment

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  • HEADLINE: Death of teenager spotlights rare heart ailment

    Copyright 2004 Chicago Tribune Company
    Chicago Tribune

    October 7, 2004 Thursday
    Chicago Final Edition

    SECTION: METRO ; ZONE C; Pg. 5

    LENGTH: 833 words

    HEADLINE: Death of teenager spotlights rare heart ailment; Screenings urged for young athletes

    BYLINE: By James Kimberly, Tribune staff reporter.

    BODY:

       The unexpected death of a Neuqua Valley High School basketball player this week highlighted an extremely rare but potentially lethal heart condition that kills a handful of athletes in the United States each year.

       The preliminary results of an autopsy showed that Roosevelt Jones III, 17, of Naperville, died of a heart attack caused by a thickening of the wall that separates the chambers of his heart. It is a treatable condition known as hypertrophic cardiomyopathy, but it is very difficult to detect and can be fatal.

       "This continues to be an unusual happening. It is devastating with each one of these, but for the most part it is quite rare," said Dr. Vince Bufalino, president and medical director at Edward Cardiovascular Institute at Edward Hospital in Naperville.

       High school athletes must undergo physical exams each year to participate in sports, but there is no requirement that their hearts be scanned.

       That is a mistake, said Larry Scire, director of sports medicine at Condell Medical Center in Libertyville, which began screening the hearts of athletes at seven area high schools and three colleges last year.

       "With a normal physical, you would never detect this," Scire said. "This is a structural anomaly that can only be seen through an ultrasound of the heart, which is an EKG."

       Scire said such screenings can cost as much as $600 a patient. That figure can be reduced if staff or equipment are donated. Scire said Condell can do it because the hospital already has the equipment. Still, the program is seeking corporate sponsors.

       "If we save one life, it will make the whole program worth it," he said.

       Jones, a backup center on the varsity basketball team, underwent annual physical examinations by a physician, his mother said. He had no history of heart trouble, she said.

       He collapsed and died Sunday evening while playing in a pickup game at the Neuqua Valley gym in Naperville.

       There will be a memorial service for Jones, a devout Christian who aspired to be an evangelist, Thursday in Calvary Church, 9S200 Illinois Highway 59, Naperville. There will a visitation at 4 p.m. and the 90-minute memorial service will begin at 6 p.m.

       The condition that afflicted Jones is extremely rare. New York pediatrician Eric Small, who specializes in youth sports medicine, said there are four to 10 deaths attributable to hypertrophic cardiomyopathy a year. There are more than
    12 million student athletes in the country, he notes.

       A student in whom hypertrophic cardiomyopathy has been diagnosed should be removed from sports because the strain on the heart can trigger a fatal attack, medical experts say. The condition can be treated with medication and in the most severe cases, a defibrillator will be implanted.

       Small was chairman of the American Academy of Pediatrics National Committee on Sports Medicine and Fitness, which studied deaths caused by the condition.

       "Most of them are not preventable," he said. "It's just one of these unfortunate things."

       Illinois suffered a spate of student athlete deaths during a six-month span beginning in October 1999.

       The string began when Fremd High School junior Brian Knuerr, 16, collapsed while playing hockey in East Dundee. In February 2000, Kevin Richards, 18, a junior at Evanston Township High School, collapsed and died after finishing second in a mile race.

       In April 2000 two more children died. Amanda Macal, 14, a freshman at Hinsdale South, collapsed while playing soccer and Ryan Garrison, 12, of Des Plaines died while playing baseball for a club team.

       Both Garrison and Richards suffered hypertrophic cardiomyopathy.

       The deaths caused the Illinois High School Athletic Association to examine the forms it provides schools for athletic physicals. The association added several questions designed to help physicians identify symptoms of previously undiagnosed heart problems.

       The IHSA requires member schools to keep current physicals for all athletes, but it does not require schools to use the association's form, said Kurt Gibson, an assistant executive director. "The form we provide is pretty all-encompassing. It's also not designed to catch every malady known to man," he said. "I don't feel like we are being negligent in terms of helping our schools protect our kids."

       But Gibson said Jones' death might prompt the association to re-examine its policies.

       "When these kind of issues come up, it forces us to take a look at what we do," he said.

       Naperville screened the hearts of more than 2,500 student athletes in 1994 and 1995 and found no cases of hypertrophic cardiomyopathy.

       Consequently, it's hard to justify the expense of mandating heart scans for everyone, Bufalino said.

       "This is a debate of economics. You can scan everyone, but where is the value?" Bufalino said.

       Bufalino said he understands the questions. "Each time this has happened we have experienced the same things: unrest, concern, worry--justifiably, quite frankly," Bufalino said. "What you really need to do is have these children examined by their family doctor."

    GRAPHIC: PHOTO: (Roosevelt) Jones (III).

    PHOTO: (Brian) Knuerr.

    PHOTO: (Amanda) Macal.

    PHOTO: (Kevin) Richards.
    PHOTOS 4

    LOAD-DATE: October 7, 2004

  • #2
    Re: HEADLINE: Death of teenager spotlights rare heart ailmen

    Originally posted by hcma
    Larry Scire, director of sports medicine at Condell Medical Center in Libertyville, - "With a normal physical, you would never detect this," Scire said. "This is a structural anomaly that can only be seen through an ultrasound of the heart, which is an EKG."

    Scire said such screenings can cost as much as $600 a patient. That figure can be reduced if staff or equipment are donated. Scire said Condell can do it because the hospital already has the equipment. Still, the program is seeking corporate sponsors.

    "If we save one life, it will make the whole program worth it," he said.
    The director of sports medicine at Condell Medical Center said an ultrasound of the heart (echo) is an EKG????? Really? - I don't believe it.


    Originally posted by hcma
    Small was chairman of the American Academy of Pediatrics National Committee on Sports Medicine and Fitness, which studied deaths caused by the condition.

    "Most of them are not preventable," he said. "It's just one of these unfortunate things."

    Comment


    • #3
      Re: HEADLINE: Death of teenager spotlights rare heart ailmen

      Sorry folks - I hit the post key before I was done
      Originally posted by hcma
         Naperville screened the hearts of more than 2,500 student athletes in 1994 and 1995 and found no cases of hypertrophic cardiomyopathy.

         Consequently, it's hard to justify the expense of mandating heart scans for everyone, Bufalino said.

         "This is a debate of economics. You can scan everyone, but where is the value?" Bufalino said.
      Just what is the going rate on the life of a student athlete in Naperville? Obviously it's less then $600 - but how much less?
      Burt

      Comment


      • #4
        Re: HEADLINE: Death of teenager spotlights rare heart ailmen

        My favorite is when Bufalino says that the kids should just get seen by their local doctor. Yeah, right. Every single one of these kids has to get an annual physical for school, so clearly that works. Duh.

        I know---I emailed the Trib (this is from my home town) and mentioned it. Either the reporter misheard or that guy is not a doctor. I'm guessing the first.

        Terribly sad.

        S

        Comment


        • #5
          Re: HEADLINE: Death of teenager spotlights rare heart ailmen

          One of the parts that struck me was when he referred to, "kills a handfull of atheletes". What a horrible analogy to valued life. So very sad indeed.
          Pam
          Dx @ 47 with HOCM & HF:11/00
          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
          Lead failure,replaced 12/06.
          SF lead recall:07,extracted leads and new device 2012
          [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
          Genetic mutation 4/09, mother(d), brother, son, gene+
          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

          Comment


          • #6
            Re: HEADLINE: Death of teenager spotlights rare heart ailmen

            Yeah, we’re going to loose a handful every year – that’s just the way it is – what’s all the fuss about? - - - No need to try to prevent it – that’s just the way it is. - - - (Where is the bubonic plague when you really need it?)

            Sarah, are you willing to write a letter to the editor’s column explaining what’s really going on, and what can be done to minimize those deaths. What equipment should be available at the scene of physical activity, and that all students should be trained to use it – as in other parts of the country.

            Also, if they scanned 2,500 students it would be possible to find no HCM cases, but the odds say they should have found five (1 in 500 on average.) I wonder how effective those examinations were. Were echo’s involved – or just a stethoscope? The kids who died, - were they screened too? Might tell you something about the screening process.

            Sarah, you said every student in the area must have an exam every year – is that the scan they were referring to with the 2,500 students? Seems like some of the people involved in the sports program need to be straightened out.
            Burt

            Comment


            • #7
              Re: HEADLINE: Death of teenager spotlights rare heart ailmen

              There is a line between medical data and cold harsh unfeeling statements about the death of a young person.

              I think this article is a accurate picture of how the "average doc" feels about HCM. I for one am not willing to let a handful of anyone die when I know it is something we CAN do something about.

              Sometimes we have to think outside of the box ... or are our children not worth it?

              Thats my 2 cents...

              Lisa
              Knowledge is power ... Stay informed!
              YOU can make a difference - all you have to do is try!

              Dx age 12 current age 46 and counting!
              lost: 5 family members to HCM (SCD, Stroke, CHF)
              Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
              Therapy - ICD (implanted 97, 01, 04 and 11, medication
              Currently not obstructed
              Complications - unnecessary pacemaker and stroke (unrelated to each other)

              Comment


              • #8
                Re: HEADLINE: Death of teenager spotlights rare heart ailmen

                Dear Burt,

                My letter to the editor yesterday pointed out the inaccuracies (echo, not ecg; cardiac arrest, not heart attack, etc), the clear inability of a routine exam to ferret out HCM, and directed them to contact the HCMA for information about screening and support.

                The exam I was referring to in my earlier post is a regular physical. Students here have to get a physical every year to enter school, but this is your standard poke & cough and not the special screening they mention that didn't find anything.

                It is galling, but Lisa is correct (as usual).

                S

                Comment


                • #9
                  Re: HEADLINE: Death of teenager spotlights rare heart ailmen

                  I had a bit of a debate with someone at my GP's office just last week about screening athletes. He's a resident who is doing a fellowship in sports medicine. He doesn't condone echos and EKG's for all athletes. His reasoning is that it's expensive and you will find things that will concern people that amount to nothing. Also, if they find something, screen further, then decide it's nothing, then your "college career might be affected" by the extra testing. I wasn't too happy when I left there, but he heard my side of the story.

                  Reenie
                  Reenie

                  ****************
                  Husband has HCM.
                  3 kids - ages 23, 21, & 19. All presently clear of HCM.

                  Comment


                  • #10
                    Re: HEADLINE: Death of teenager spotlights rare heart ailmen

                    We have to do something big to bring more accurate awareness to Hcm and to put it on the map in everyones life for at least one day a year. We need a hearts across the nation type of campaigne or something, a special day. What do you think?

                    I was appalled when I recently talked with the high school nurse in my town. She told me that there are AED's at the high school and one shared between the middle school and the elementary school and this she was not totally sure of. She told me that after much discussion they as a unit decided to keep it locked in the nurses room where THE DEVISE would be SAFE . She just did not have time for me or did she feel there was anything she could do. . I am still shocked by such a ridiculous plan. I asked her about after school activities and awareness of the devise by all . She was not sure.

                    I also recieved a call from John Shriever , the man who was highlighted in the " Article in local Newspaper" that I posted recently. He is a spokesperson for Early Defibrillation. He told me that this same scenario with poor access to the AED's is too common. He has worked with individual communities to help them resolve this problem and fight the political over rides by working his way into the back door as he said the front door approach often never works. The approach literally bombards the decision makers by getting people proactive and fired up so that they make many , many phone calls and basically the decision makers are forced to deal with the requests and make appropriate changes that are acceptable to early defibrilation and better odds of saving lives. Makes a lot of sense huh?

                    Well just wanted to share this and this article got me going.

                    Pam
                    Dx @ 47 with HOCM & HF:11/00
                    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                    Lead failure,replaced 12/06.
                    SF lead recall:07,extracted leads and new device 2012
                    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                    Genetic mutation 4/09, mother(d), brother, son, gene+
                    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                    Comment


                    • #11
                      Re: HEADLINE: Death of teenager spotlights rare heart ailmen

                      There were alot of mistakes in this article.

                       "With a normal physical, you would never detect this," Scire said. "This is a structural anomaly that can only be seen through an ultrasound of the heart, which is an EKG."

                      As we learned at this year’s annual meeting, there is a significant percentage of the time that HCM can not be diagnosed, even with an EKG and an Echo.
                       "If we save one life, it will make the whole program worth it," he said.

                      Sorry guys, I know I’m in the minority here, but the cost of every high school athlete getting an Echo, every year is too great. You would get much better bang for your buck by raising public awareness.
                       The condition that afflicted Jones is extremely rare. New York pediatrician Eric Small, who specializes in youth sports medicine, said there are four to 10 deaths attributable to hypertrophic cardiomyopathy a year. There are more than
                      12 million student athletes in the country, he notes.

                      That figure is extremely low. This should have been the location in the article where HCM accounts for almost 40% of all this type of sudden death.
                       The condition can be treated with medication and in the most severe cases, a defibrillator will be implanted.

                      Achem…excuse me? What about a Myectomy?
                       “Most of them are not preventable," he said. "It's just one of these unfortunate things."

                      I am for greater public access for ACD’s, which would make most of these deaths preventable.
                       Naperville screened the hearts of more than 2,500 student athletes in 1994 and 1995 and found no cases of hypertrophic cardiomyopathy.

                      Likely these were EKG’s and not Echo’s.
                      Fx

                      Comment


                      • #12
                        Re: HEADLINE: Death of teenager spotlights rare heart ailmen

                        Hi EVeryone,
                        I quickly read over this article and everyone's responses. I am currently in Manhattan, KS getting ready for the 8th heart screening event put on by The Anthony Bates Foundation. Thanks to everyone here and Lisa for supporting my life's work to bring awareness and educate to young people and their parents about the need for heart screenings for our youth.

                        What this article and the other that I saw last week, doesn't tell the readers is the need to add AED's (Automatic External Defibrillator's ) in our/their schools. The administrators of this same school were approached three months ago, to purchase AED's. The response to the AED company - "we don't need them in our schools!" Now the administrators are calling for an appointment to purchase AED's. Too bad it takes a tragedy for the light bulb to go off.

                        Let's make a point to email Oprah and get her attention on this matter and the need for heart screenings for our young people. I have asked my Chicago contact to check around for Oprah contacts. Maybe he knows someone that knows someone that can get us on her show. We need to think big and go big to save young people from the unknown.

                        After Sunday's event here at Kansas State Univeristy, I will post the numbers on the message board. Until then...think good thoughts and I hope everyone is doing well!

                        All my best,
                        Sharon

                        www.AnthonyBates.org

                        Comment


                        • #13
                          Re: HEADLINE: Death of teenager spotlights rare heart ailmen

                          Dear Sharon,
                          Your cause is a great one, and there is much to be done. I’d like to take this opportunity to make a few comments on what issues I feel need to be reiterated.

                          To give every student an echo every year is a ridicules assertion used mostly by people who would prefer to do nothing, in my estimation. It would be outrageously expensive and break every school budget that exists. But – how about a medical questionnaire in which the proper targeting questions are asked? Then, only those with risk factors and / or demonstrated symptoms would get the echo. This would dramatically cut the costs and improve the ‘catch’ ratio. You possibly could then get large sport affiliated companies to foot at least part of the costs – just for the bragging rights.

                          If it would be financially imposable to fund most remaining echo test requirements out of the school budget, and no corporate sponsors could be found – you could at least notify the parents of what action to take on their own (with a note for the doctor) and then pick up only those students who’s parents have no insurance and could not afford the testing fees themselves. This should make the process eminently more affordable.

                          Then, how about getting AED’s into the schools, and once there, out of the locked cabinets and out to the places where the physical activity is being preformed. And – how about holding ‘hands on’ training classes on its use for every student in the Phys Ed program – ideally at the beginning of every semester.

                          What that would do, I believe, would be to;
                          - catch more ‘at risk’ students then we do now
                          - improve the survival rate of those who collapse on the playing field
                          - not break the school budgets
                          - and make the whole sports program safer for everyone involved.

                          Sharon, I directed my comments to you because I know you are working diligently to try and save as many student athlete lives as you can, but I really meant my comments for anyone who could help move these procedures closer to reality.
                          Love you all - Burt

                          Comment


                          • #14
                            Re: HEADLINE: Death of teenager spotlights rare heart ailmen

                            Hello Burt,
                            To respond to your questions:

                            - improved questionnaires and consistant processes for sports physicals would be a start, and optimal in our cost conscientious society.

                            - even adding ECG's to sports physicals could be less expensive than echos and add to the "catch" ratio

                            - I'm not sure if putting a large sports affiliates name on this effort is in the near future, but we keep trying to get people to pay attention to our message or buy into the cause.

                            - financial impossibilities are my specialty. I already have a heart screening process that shows that it is more affordable. The FREE heart screenings that I put together are not entirely free, but the costs per participant range from $5 to $25 each. The larger events reduce the costs considerably. If an echo has a cost of $600 to $1600 why are we paying so much in the "retail" world - overhead, doctors fees, machine costs. I don't own my own echo equipment yet, but that could happen. The heart screening model that I have is available for use by other groups that would like to provide heart screenings for their young people.

                            - AED's in schools will take more time and effort to accomplish, just like heart screenings for our young people. I will keep going as long as people will keep listening.

                            All in all we are headed in the right direction. Education and awareness are the keys to building a safer tomorrow.

                            Sharon

                            Comment


                            • #15
                              Re: HEADLINE: Death of teenager spotlights rare heart ailmen

                              Hi everyone, I've emailed Oprah twice and told her about my project and the need for more awareness of AED's in schools and public places. If anyone goes to the Oprah show--------I WANT TO GO TOO!!

                              Thanks, Cynthia

                              Comment

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