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Cheering on a helping heart - story about our Cheerchicken!

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  • Cheering on a helping heart - story about our Cheerchicken!

    Cheering on a helping heart
    By RYAN EADES Sports Editor

    --------------------------------------------------------------------------------
    When a 16-year-old high school cheerleader is diagnosed with a genetic disorder that is the leading cardiological cause of sudden death in young athletes, you would think her first fear would be her own death.
    Meet Janelle Albert.

    As she sits in her living room looking as healthy as the athlete she has been since the fifth grade, she ponders her biggest fear. "It's not dying. A lot of people think it's dying, but it's not. It's probably more that other people have it. I've always been a cheerleader and all my friends are athletic so I think, 'what if they have it and don't know about it?' "

    In February Janelle was diagnosed with hypertrophic cardiomyopathy, or HCM. In general terms HCM is a genetic disorder in which thickening of the left ventricle in the heart occurs.

    It is a relatively uncommon heart disease but of all cardiological causes for sudden death in young athletes, HCM accounts for approximately 30 percent of these deaths. It is estimated that about 1 in 500 people in the United States are affected by HCM. That translates into about 300,000 Americans that have this disease. Currently 2,700 students attend Bowie High School and Janelle is the only known case of HCM.

    In a normal heart an electrical signal starts at the top and passes through all parts of the heart to make it beat. The abnormal thickening of the heart associated with HCM can interfere with this signal. While there are many specific forms of HCM, Janelle's problem lies in an inability of her heart to fully relax between beats. The stiff muscle in HCM requires higher pressures than normal to expand with the blood's inflow which reduces the amount of blood her heart can hold which then limits the amount ejected in each beat.

    For Janelle she feels this process in the form of chest pains during exertion. She says that, "in eighth grade I had chest pains especially the last lap of running the mile and my teacher said I was out of shape and to run the mile another day and get over it. Over time it got worse and worse until this year it got so bad I couldn't even run one lap out of four."

    Janelle finally sought help and when she went to her doctor she was told it was asthma because she had it as a child. When there was no improvement a second doctor's visit resulted in the diagnosis changing to a form of arthritis that involves an inflammation of the chest wall that causes pain during exertion. Finally after months of no improvement Janelle stopped going to her pediatrician and went to her mother's doctor.

    "I think a big thing for her was the frustration," said Janelle's mom, Kristy Albert. "She kept pursuing the right diagnosis because she knew something was not right. It was really her driving me saying, 'it's not any better.' "

    It was in her mom's doctors office that something new was discovered. "They heard a murmur and wanted me to get an ECHO," Janelle said of her first visit to Dr. James Ross office in Bowie.

    An ECHO is short for echocardiogram and it is the necessary test to properly diagnose HCM. An ECHO is a nonintrusive test that makes an ultrasound scan of the heart. It produces a picture in which the thickness of the heart can easily be measured. In addition to the picture, a Doppler ultrasound produces a color image of blood flow within the heart showing the heart's contractions and filling so any turbulent flow can be detected.

    Kristy described the visit even saying that Ross' office asked her, "the pediatrician never picked this up?" However she continued saying that Janelle had, "never had an EKG or an ECHO done because it wasn't required and they never really had any concern. Even though they had been listening to her heart, the murmur was never picked up."

    An EKG is another test that could lead to the detection of HCM. It is short for electrocardiogram and it records electrical signals from the heart by placing electrodes to the chest, wrist and ankles. The problem with EKGs is that abnormalities detected from the test are not specific to HCM and in reality only about 10 percent of HCM patients show it on an EKG. Hence the need for the ECHO.

    It was with Ross' diagnosis of HCM for Janelle that he recommended the Alberts travel to Minnesota for treatment. Kristy said they, "went to Minneapolis because Dr. Maron is a world renowned, foremost specialist in his field."

    Dr. Barry Maron is the director of the Hypertrophic Cardiomyopathy Center at the Minnesota Heart Institute Foundation. He is the leading authority on HCM having published over 500 papers on various forms of the disease and has comprehensively investigated causes of sudden cardiac death among young athletes.

    In Minnesota, Maron performed an EKG and ECHO on Janelle along with tests that included running and jumping to measure her heartbeat and stress levels. Kristy said, "It was kinda frantic, she's got all these wires and she's jumping to the other table so they see what sort of stress and flow there is and if some sort of obstruction is developed." Janelle's take on the testing was that, "It was fun."

    Certainly a positive that came from the testing was that no obstruction in the heart was found. Janelle said that, "some people get an obstruction only when they are running, but I didn't get one at all."

    "Which is good," mom quickly added.

    In Minnesota Janelle was put on a medicine called atenolol, which is classified as a beta-blocker. These drugs are designed to slow the heart beat and reduce its force of contraction. However Kristy said that soon Janelle will be switched to another classification of drug treatment called calcium channel blockers. The cal cium channel blockers improve the filling of the heart and while both calcium and beta blockers reduce
    chest pains, the calcium channel blockers are supposed to be specifically for HCM patients and in Janelle's case will give her heart time to soften up between beats.

    With medicine in hand Janelle now awaits the diagnosis from the Minnesota Heart Institute. Kristy said, "the report is being sent back to Dr. Ross here and they'll let us know from that point. I think treatment will continue here but Dr. Ross refers back to them."

    In the meantime Janelle has had to cease all strenuous activity, including her cheerleading career at Bowie. "They gave us their recommendation as far as what her activity level can be," said Kristy. "The gist of it is that she can only do things she can stop immediately. She has to use her chest pain as a meter and be able to pull away from something immediately. Cheerleading, the majority of it is out because of the repetition and stunting, and if she were a base and had somebody in the air and had to stop it'd be endangering someone else's life."

    The physical restrictions are not going to stop Janelle from being with her teammates. "I'm addicted," she says "I can't get away, never gonna happen. I'm going to learn how to coach gymnastics and I've done stunting since I was in fifth grade so I can see a lot of stuff and watch and help out that way."

    Janelle will miss the competition, but recognizes that she wouldn't be able to apply the "stop immediately" theory in the heat of battle because she "could never give up."

    She was immediately pulled off the team in the middle of competition season once she was properly diagnosed. But it was that six months of misdiagnosis that still has her mom worried. Janelle had passed all the required physicals to participate in high school sports in the state of Maryland. Kristy says, "It seems like there is something more they could do in sports physicals, not just for HCM but there really is no focus on heart healthiness and yet it's so devastating."

    Janelle agrees saying, "Even if they just asked questions because family history is really a big part of it, and I didn't have that but even if they just ask questions they could find out a lot more."

    Bowie High athletic director Bob Estes says that the guidelines the school follows are set by the county and state and only require that the student get a physical and that it is good for one year from the date of the examination. From there he says, "It is up to whatever physician is examining them to decide that the athlete is cleared to participate in their sport. The school doesn't decide anything, it is up to the doctors."

    The easy answer seems to be making an EKG and an ECHO part of a sports physical or preparticipation screening. However Maron explains that it really isn't plausible to make that happen. "It's not a viable option," said Maron. For reasons of cost consideration and resources any screening requirement inclusive of an EKG and ECHO would have to be funded by the government. In an article published in The New England Journal of Medicine Maron says that, "Obstacles to implementing obligatory government-sponsored national screening in the United States involving electrocardiography, echocardiography, or both include the particularly large population of athletes, major cost-benefit considerations, and recognition that it is not possible to eliminate the risks associated with competitive sports."

    So without required tests to check for HCM, a student-athlete like Janelle would have to rely on much more basic warning signs. Some of the tell- tales include shortness of breath, chest pain, palpitation, and even blackouts, but Janelle advises a simpler technique. "You just have to pay attention to your body. Everybody pushes themselves saying 'one more,' it's not a sport unless you push yourself." She continued in regards to not wanting to face giving up a sport, "I know how it feels. But if something is wrong you need to get it checked out because most people don't and they die. Which would you rather have, be pulled out of a game or drop dead on the court?"

    She also asks that coaches and parents think twice before just telling their kids they are out of shape when they watch them run and train but still don't feel right. "It's frustrating," she says "whenever they're telling you you're not in shape but you are doing so much, and a lot people push themselves because they want to be in shape and healthy and be able to run. It's frustrating not to be able to run, not to being able to go up stairs, but at a certain time you've got to realize it's not because you are out of shape, at a certain time it changes to something more serious."

    Janelle was smart enough to listen to her body and now that she has the right diagnosis, life must go on as she learns to live with her disease. After high school she plans to attend an art school and study photography, though the hopes of this bright young lady reach a lot higher than her own career aspirations. She says her biggest hope involves helping other people. "It's amazing how many people die of HCM. They never knew and nobody had ever done anything about it. That's a big deal to me."

    --------------------------------------------------------------------------------

    Published 03/25/04, Copyright © 2004 The Bowie Blade

  • #2
    Re: Cheering on a helping heart - story abour our Cheerchic

    What a great article!!!! and what a great attitude cheerchicken. This hits the nail right on the head and you did a GREAT job explaining your situations and how to handle things. You are an inspiration to others in your continued involvment in the sport you enjoy and your desire to help others.

    Comment


    • #3
      Re: Cheering on a helping heart - story abour our Cheerchic

      This is a great story!! I think is really explains many of the issues we with HCM live with and understand but the general public need to understand better.

      3 cheers for our cheerleader!!!!!!!!!

      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


      • #4
        Re: Cheering on a helping heart - story about our Cheerchic

        I would like to congratulate the author of the article, Ryan Eades for doing an excellent job of research and getting most of his facts correct. Most articles that I've read on the subject gloss over the condition. Some just simplfy it to "Cardiomyopathy" and never go into any detail.
        This was such a well thought out peice of journalism, perhaps the author could be invited to the conference in June?
        Fx

        Comment


        • #5
          Re: Cheering on a helping heart - story about our Cheerchic

          thanks guys!!! yeah, ryan was definatly on our team. my mom just mentioned it to him and he came back saying he had already talked to dr. maron and was ready to set up an interview with us!!! we were shocked!!
          ~janelle*
          \"The heart swells at the magnificance\"

          1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.

          Comment


          • #6
            Re: Cheering on a helping heart - story about our Cheerchic

            We are all proud of you! You have done a great thing by sharing your story with the world!

            Take care!

            Lis
            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


            • #7
              Re: Cheering on a helping heart - story about our Cheerchic

              A follow up on the article...
              My cardio called to confirm an appt for tomorrow and said that someone came in yesterday to get tested because they were concerned after reading the article. so i know i at least helped on person and that makes it worth it!!
              ~janelle*
              \"The heart swells at the magnificance\"

              1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.

              Comment


              • #8
                Re: Cheering on a helping heart - story about our Cheerchic

                That's all it takes is one person at a time!
                You are doing a great job!

                Mary S.

                Comment


                • #9
                  Re: Cheering on a helping heart - story about our Cheerchic

                  'By saving one person you save the world'
                  Schinldlers List

                  You have done more good then you will ever know. You should be VERY PROUD of yourself...I know I am proud of 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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