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Tilson's suggestion for publicizing HCM

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  • Tilson's suggestion for publicizing HCM

    There are many risks to the health of our children. HCM is one of them.

    My seven year old son recently had bacterial meningitis. He nearly died twice, and had to learn to walk again.

    I began researching the leading risks to the health of children. There are many. Some of the others include car accidents, falls, riding bicycles without helmets, swimming pools, meningitis, etc. HCM is one, and is an important one. But it is not that common. And, we parents are overwhelmed with all the things we have to do to protect our kids.

    That gave me an idea that I will pursue:

    Making a one page sheet of the leading risks to the health of our children, and the things we can do to protect our children. They would include things like:

    using car seats
    bicycle helmets
    swimming lessons
    knowing the signs of serious infection
    smoke detectors in the house
    protecting them from predators

    and

    included on the list in a prominent place

    Ruling out cardiac conditions that can cause sudden death.

    We will probably not convince anyone that undiagnosed HCM is the leading cause of childhood deaths, and have a cardiac echo is the top priority for any parent who cares about his or her children.

    But

    If we can create a list, and that is what I am going to do, of the top twenty or twenty five things parents need to do to protect their children, and having a cardiac echo is on the list, then I think our message may get more attention.

    In any case, this is an issue I am presently researching.

    I would appreciate your comments, suggestions, and assistance.

    If you object to this idea, let me know why you think it is a bad idea. You may well be correct.

    Thanks

    Lee Tilson

    [email protected]

    313 550 7500
    [email protected]

    Detroit, Michigan
    Proud father of Andy, Meaghan, and Sean

    medical research:
    http://www.ncbi.nlm.nih.gov/PubMed

    www.vivisimo.com

    Laugh:
    http://www.cbs.com/latenight/lateshow/top_ten/

  • #2
    Each item listed becomes the basis of a coalition

    So each possible cause of an injury to children becomes the basis of another organization's endorsing the list. Then each organization is promoting a list with HCM on it.

    so each of the other groups will be promoting our agenda, and their members will be alerted to HCM.
    [email protected]

    Detroit, Michigan
    Proud father of Andy, Meaghan, and Sean

    medical research:
    http://www.ncbi.nlm.nih.gov/PubMed

    www.vivisimo.com

    Laugh:
    http://www.cbs.com/latenight/lateshow/top_ten/

    Comment


    • #3
      Re: Tilson's suggestion for publicizing HCM

      How will you distribute this information/list? Sounds good, just wondering.

      Reenie
      Reenie

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

      Comment


      • #4
        Re: Tilson's suggestion for publicizing HCM

        Lee, this is a good idea and the work is already started for you. The Emergency Nurses Association has a group, "ENCARE", Emergency Nurses Care. It is their Injury Prevention Institute. I have listed the website below. The group provides education programs for the community offering speakers for groups (lots of programs in the school system for kids) and publications. They formulate position statements on pertinent issues and lobby our legislators, among other things. Check out the site and see if it offers a beginning for the project. Linda

        http://www.ena.org/encare/fact/

        Comment


        • #5
          Re: Tilson's suggestion for publicizing HCM

          Hi Lee,

          Great work and i love the idea of networking to reach more people. This would get information into the hands of a lot of parents.

          We still need to get HCM into the minds of the general population as well, since there's a lot of adults (without children) walking around with undiagnosed HCM who would not get this info. It is my understanding that a good portion (if not the majority) of HCM cases do not develop until young adulthood, at which time the affected person may not still be living at home, or at the very least, have reached an age where parents are no longer as concerned about the other childhood risks you mentioned, and again these people would not get the info. There are so many things to worry about as a parent these days, you just hope your child lives through it without getting killed. I'm afraid something as rare as HCM is pretty low on the list of things to worry about.

          Perhaps we could take your good ideas, and expand on them to reach an even greater population? What about high schools and colleges? Are coaches and school nurses informed about HCM and some warning signs they might look for? Etc.

          Jim
          "Some days you're the dog... some days you're the hydrant."

          Comment


          • #6
            how to establish more contacts for our message

            First, I am trying to compile a list of the leading preventable causes of serious injury or death to children. The idea is to focus on stopping "hidden killers" of children.

            Things like automobile accidents, bicycle accidents, HCM, meningitis, etc.

            I will probably not include causes that are untreatable, or that are obvious. I will be looking for the most dangerous preventable causes.

            I will then try to reach out to every group I can that addresses one of the causes on the list. Ask those groups to participate.

            I envision one sheet, two sided, laminated, that can be distributed to parents everywhere. Through all routes available.

            Thanks for the information you have shared with me.

            I have come across some very interesting web pages, particularly at the CDC on causes of death at various ages. There are a number of "injury prevention" centers in the country. Many have web pages.

            I welcome anyone who wants to work on this.

            The main reminders to me came from my son's recent bout with meningitis and Lisa's recent comment to a member noting that people wioth HCM can still die of cardiac disease that may be unrelated to HCM--- ASD.

            Any of our children can die in a fire, a car accident, from meningitis or any other cause. The fact that a child has HCM does not immunize the child from other mechanisms of injury.

            If we can make our message a part of a larger message about protecting children, then others can and will help us spread our message.

            HCM kills. But many deaths from HCM can be prevented.

            My own guess is that more kids die from HCM than die in fires or kidnappings. But what gets the television time? Fires and kidnappings.

            I want to try to compile the statistics so we can have HCM ranked up there with the other leading killers of kids. It will be behind Automobile accidents, but ahead of many other diseases we hear so much about.

            Thanks for listening to this little diatribe. Please share your wisdom with me.

            Lee Tilson
            [email protected]
            313 550 7500
            [email protected]

            Detroit, Michigan
            Proud father of Andy, Meaghan, and Sean

            medical research:
            http://www.ncbi.nlm.nih.gov/PubMed

            www.vivisimo.com

            Laugh:
            http://www.cbs.com/latenight/lateshow/top_ten/

            Comment


            • #7
              Re: Tilson's suggestion for publicizing HCM

              Sounds like a great idea. How about getting it to Canada too????
              Life is too short to worry about the trival things in life, So live life to the fullest.

              Comment


              • #8
                Re: Tilson's suggestion for publicizing HCM

                Now you all see why I have asked Lee to be on our board... he is a great thinker!

                Thanks Lee - Ya know I love ya!

                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


                • #9
                  Re: Tilson's suggestion for publicizing HCM

                  Oh wait... the light bulb just went off in my head... bing!

                  My apologies Lee. My understanding of your original post was incorrect. I thought you were throwing out an alternative to our Oprah thread, and suggesting a way to reach the general population about HCM, when in fact what you are trying to do (and it's a super idea) is concentrate solely on getting information out to parents to prevent HCM deaths in children, period. My bad! In targeting that specific audience, i do believe that you're onto something here, and it certainly is an important issue for parents... especially when you consider that if you're trying to prevent the death of a child from HCM, chances are that one of the parents you're speaking to has it as well.

                  It's a tough call... the chicken or the egg? Do we target parents to tell them their children are at risk, then add 'by the way there's a very good chance that your child got it from you and that you or your spouse have it as well? Or do we target everybody, and tell them that if they have HCM, there's a 50/50 chance their children have it and should be screened? Frankly, i'm torn. Parents are very sensitive to what might happen to their children. Possibly in aiming to prevent HCM deaths in children, everybody else will stand up and take notice as well. We just have to make sure that HCM doesn't become labeled in parents' minds as a childhood disease, since more often than not, it isn't, and may not even show up until adulthood.

                  Where do we get the statistics to move this up on the list? I have to believe that not all childhood deaths due to HCM are even properly diagnosed and reported as such... there's a ton of adults on this board who were not properly diagnosed and/or lost a loved one to HCM without being reported as such.

                  Let me know how i can help.

                  Jim
                  "Some days you're the dog... some days you're the hydrant."

                  Comment


                  • #10
                    Re: Tilson's suggestion for publicizing HCM

                    Great ideas, Lee!

                    Let me know if there is anything I can do to help you.

                    Sincerely,
                    Sharon Bates

                    www.AnthonyBates.org

                    Comment


                    • #11
                      Re: Tilson's suggestion for publicizing HCM

                      I have downloaded a list from various sources of leading causes of death of various age groups.

                      I want to pin these down a little more precisely.

                      For instance, I am trying to look at a category such as "cardiac" related deaths and try to subdivide it into categories.

                      anyone who wants to help me is welcome.

                      Mostly I need some people to bounce ideas off, since there will be a multitude of critics to anything that is developed.

                      Right now I am focusing on so called "leading causes of death" in children.

                      I am trying to expand it into include "serious injury" but am having difficulty defining that concept.

                      I am compiling a list of leading centers for injury prevention in the country. I am collecting articles on the subject.

                      all co conspirators are welcome.

                      Lee
                      [email protected]

                      Detroit, Michigan
                      Proud father of Andy, Meaghan, and Sean

                      medical research:
                      http://www.ncbi.nlm.nih.gov/PubMed

                      www.vivisimo.com

                      Laugh:
                      http://www.cbs.com/latenight/lateshow/top_ten/

                      Comment

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