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  • Go Linda So!

    http://m.palmbeachpost.com/pbpost/pm...tguid=XuSsdFRe

    What you should know about sudden cardiac death
    [email protected]
    Posted: 06/06/2011 4:40 PM

    When Adrianna Guzzi complained that she got tired walking home from school, her mother figured she was just angling for a ride.

    When Adrianna complained she was having trouble catching her breath, her mother figured it was because she'd been riding her scooter nonstop since unwrapping it on Christmas Day.

    None of Adrianna's complaints added up to much and Terry Salina didn't give them much thought. Then, on Jan. 3, Adrianna collapsed and died after jumping on a friend's trampoline. She was 13.

    Now, the Greenacres woman thinks a lot about her daughter's seemingly inconsequential complaints.

    "I wish I could turn back the clock," she says.

    Linda Sowden's own misshapen heart aches when she hears such tales. Like Adrianna, she suffers from hypertrophic cardiomyopathy an incurable genetic disease characterized by a thickening of the heart muscle. Like Adrianna and Salina, she ignored the warning signs.

    "Unfortunately for Adrianna, her first symptom was her last," Sowden said.

    Poster child

    The 59-year-old Tequesta woman is frustrated that information about the disease, which afflicts an estimated 1 in 500 people or 600,000 nationwide, isn't more widespread.

    It's been 21 years since Loyola Marymount University basketball star Hank Gathers became an unwitting poster child for the disease after he collapsed and died during a game. It rocketed back into the news earlier this year when Michigan high school basketball player Wes Leonard collapsed and died minutes after shooting a game-winning point.

    Coming almost 21 years to the day after Gathers' death, many speculated that 16-year-old Leonard had also succumbed to hypertrophic cardiomyopathy, known as HCM. Medical examiners determined he died from dilated cardiomyopathy, a related, but less common cause of sudden cardiac death.

    While such tragic deaths snare headlines, they also leave a mistaken impression, Sowden says. The symptoms are often triggered by exercise, but young athletes aren't the only ones at risk.

    Of the roughly 150 people under the age of 24 who die each year from HCM, an estimated 30 are involved in organized sports, said Lisa Salberg, founder of the Hypertrophic Cardiomyopathy Association.

    The deaths of young athletes capture the public's attention because they seem to be in peak physical shape.

    "You have the pictures of these kids," she said. "You're not going to have the picture of the kid collapsing while walking down the hall in school or dying in their sleep."

    Disease can be treated

    Salberg's goal is to increase screening of all children for HCM and other diseases that cause sudden cardiac death. If caught early, HCM is treatable and those diagnosed can expect to live long lives.

    Exactly how far screening should go is debated. Parents, who have lost or almost lost children to HCM, believe medical tests should be mandatory.

    "We advocate a baseline EKG on kids, especially kids in sports," said Patti Dunlap of Boynton Beach. In 2009, her then-15-year-old daughter, Claire, collapsed while celebrating a victory with her American Heritage softball team. An off-duty firefighter used an automated external defibrillator to restart her heart.

    Salina and her husband, Joseph, said testing should be part of every school physical. Doctors never gave them reason to suspect anything was wrong with Adrianna's heart.

    But, medical experts say, doing electrocardiograms or echocardiograms on every student athlete, much less every child, would be a waste of money. "The medical system couldn't accommodate it nor would it be warranted," said Miami neurologist Dr. Ralph Sacco, president of the American Heart Association. In addition to the cost, he said false positives would needlessly subject kids to invasive tests.

    Like Sacco, Salberg said a better approach is for people to give their doctors extensive medical histories. Her group is lobbying state lawmakers to require that forms be sent home with students to increase parents' awareness of the warning signs and the type of information they should share with their children's doctors. They, along with parents, would then determine if tests are needed.

    However, once someone in a family has been diagnosed with HCM, all family members should be tested, Salberg said. Her family offers a chilling example of the power of genetics. HCM claimed the life of her grandfather, aunt, uncle, father and sister. She has it as does her daughter, niece, cousin and other family members.

    Never too late for testing

    Dunlap said after Claire's collapse doctors insisted other family members get tested. She was especially concerned about her son, who plays soccer. None of them tested positive. With a defibrillator implanted in her chest, Claire was able to return to the softball field, helping her team win a state championship in May.

    Salina said doctors also told her that she and her son should be tested even though she suspects the disease came from Adrianna's father's side of the family.

    "I don't feel I have anything going on but out of respect for her I should have it done," said Damion Smith, 25, who is devastated by the loss of his sister.

    Sowden, 59, said it's never too late to get tested.

    Look at her, she said. After years of telling doctors about constant fatigue and shortness of breath, she was finally diagnosed with HCM four years ago. She had open heart surgery, a defibrillator implanted in her chest and takes medicine to control the disease.

    "I'd never heard of it and I'm a nurse," she said.

    As for Salina, she talks to her daughter by posting daily messages at online tribute sites and setting an extra place at the dinner table.

    "I know she is gone but writing to her gives me comfort," Salina says of the online missives. "It brings me to her. I feel like I'm speaking to her."
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

  • #2
    Re: Go Linda So!

    This is a great article. Kudos to Linda So and all the others for sharing. Is it common to let a kid play softball after insertion of an ICD?
    Midge

    Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
    ICD&Pacemaker 1996
    Heart transplant March 19, 2004 @ Mayo Rochester
    Mom of Kaye.

    Comment


    • #3
      Re: Go Linda So!

      Great job Linda! Thanks for representing us to that part of the world.

      Leon
      God Squad co-moderator
      Nothing is as gentle as strength and nothing is as strong as gentleness

      Comment


      • #4
        Re: Go Linda So!

        I am very pleased with this article. I will attach the link to what appeared in this morning's paper complete with pictures of a beautiful 13 yr old girl who suffered a SCD.

        I, like many of you, want to become more involved with the HCMA. For me, that started with my involvement with this message board. I want to expand my circle of influence. When I read the story of Adriana's passing back in January, a small voice deep inside me suggested that perhaps an opportunity was presenting itself. I sent the reporter an email talking about HCM, the need to educate and would she be willing to write a follow up story. I did not hear anything for 3 months. When I received a response, we immediately set up a meeting to do an interview. That was 3 months ago. I periodically sent a f/u email. Yesterday I was contacted again that the article would be in print today. I am more than pleased with the way this story has been layed out. It is on the front page of the accent section with very large pictures with continuation to page 4. All inclusive, this article is about 2/3 of a page in print. I am more than pleased. The goal was to do a story about HCMas a means to mass educate the readership of the Palm Beach Post.

        After attending this weekends meeting, I literally see mulitple door to knock on. I know school teachers, principals, pediatric health care workers, physicians, other medical professionals, charter school development personnel and on and on. I have some ideas about Dr. Drill. I have some ideas about the HCMA Screening Form for school age children. One person at a time, I plan on making a difference. Are you willing to make a difference? I am standing on a springboard ready to dive into the next phase of my HCM. Would you consider doing the same? Will you work with us? There is much work to be done. In the past, I have served others by providing medical care in western Africa and Haiti. It would be foolish for me to continue to do that. But a new opportunity, a safe opportunity is wide open for all of us. Please join in.

        http://www.palmbeachpost.com/health/...h-1522091.html

        Linda
        Onward and Upward !

        Diagnosed 4/07 HCM with fixed & dynamic obstruction
        Myectomy with resected cordonae tendonae 4/08 CCF
        ICD 10/08

        Comment


        • #5
          Re: Go Linda So!

          This is simply wonderful!

          I am inspired to do the very best that I can in spreading the news about HCM here in Detroit.

          Nellah

          Comment


          • #6
            Re: Go Linda So!

            I am sooooooooooooo proud of Linda So!
            She knocked this one OUT OF THE PARK! I also sent an email to the editor of the paper stating that the reporter did a wonderful job... this may well be the best article in a community paper ever!
            YEAHHHHHHHHHHHHHHHHHHHHHH Linda!

            thank you!

            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

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