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Trying not to overreact, but need to know about screening


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  • Trying not to overreact, but need to know about screening

    Hi everyone, I have been reading on your web site and forum and already I feel at ease. My mother just received her diagnosis about two weeks ago. She learned about the genetic connection this week and shared with my brother and I. She is 51 and is experiencing problems now. She was diagnosed with panic attacks in her 20's but now we are wondering. I have four children and my brother has one. I have an appointment with my family doctor next friday to discuss this. I called my pediatrician and he referred the children to a pediatric cardiologist. After reading on here, I am not sure is they need to be screened yet. Do I have to have it for them to have it? I have never had problems. My children are 9, 7, 7 and 4. Please give me any information on screening and what I can expect. It was enough to be concerned and prayerful for my Mom, but now I am worried about her siblings, my grandparents, my brother, my neice and my own children. It is a little overwhelming. Thank you in advance for any help. God Bless!

  • #2
    You and your children definitely need to be screened. My exhusband was diagnosed back in 1998. We have two children that are now 10 and 12. Since 1998 I have had them checked by a pediatric cardiologist every year. There is a 50% chance they will develop it. My son was just diagnosed two months ago. I am glad that I have been taking him and now I know he is getting the treatment he needs.

    It seems to me the people who normally die from this disease are the ones that do not know they have it and have never been diagnosed. Once diagnosed, there is so much excellent treatment that it seems people with HCM live long, productive lives.

    I know it is alot to take in. I remember when my husband was first diagnosed. I was scared to death. Knowledge has helped me to understand the disease better and make the right choices for my children. I hate that my son has it but I am so glad that I know so I can make the right choices for him and make sure he gets everything he needs. He does not like it but he understands what he has to watch for and he has accepted and still loves every day of his life!

    I pray that no one else is diagnosed in your family, but they all should really be checked. My exhusbands brother also has been diagnosed. Just learn as much as you can and hang in there! Janet
    My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.


    • #3
      Thank you Janet

      I so appreciate you responding so quickly. I am sorry about your husband and son. Can I ask if you had your children tested as soon as you learned?


      • #4

        Hi I also have HCM and now waiting to go on the transplant list and just to confirm what Janet has said get your children checked it will also ease your mind and to let you know as far as we know my father was never diagnosed of HCM he has had several surgeries on his heart and we know for sure it is on my fathers side of the family several have of the disease, we seem to have the nasty sudden death gene in our family, everyone needs to get checked in your family the sooner it is caught the better and hopefully med treatment will work, welcome to our site

        Diagnosed 2003
        Myectomy 2-23-2004
        Husband: Ken
        Son: John diagnosed 2004
        Daughter: Janet (free of HCM)

        Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9


        • #5
          Hi Jen,
          I have a story I tell about this, and it goes something like this;
          HCM – Hypertrophic Cardiomyopathy and/or HOCM – Hypertrophic Obstructed Cardiomyopathy affects an estimated one in five hundred people, although most of them do not know they have it. Instead, the symptoms are often misdiagnosed as panic attacks, being out of shape, lazy, hallucinatory, and many other wild conceptions.

          There wasn’t much known about it until fairly recently, and many cardiologists still are somewhat vague on this genetic illness. If only one in five hundred have it, and most of them do not know they have it, it represents only a tiny little corner of a cardiologists practice, - and they of course spend almost all of their research and study time on the conditions they see come in their door every day. Consequently we spend much time learning all about the illness ourselves, and prize the cardiologists and hospitals/centers that specialize in this ailment.

          A person can have this genetic disorder and have no symptoms their entire life – yet pass it on to their children, and another person can have many sever symptoms yet pass it on to none of their children. It is what is called a dominant gene or group of genes, so the chance of passing it on to your children is 50%. (That’s the chance – or average. It does not mean that if you have four children two of them will necessarily develop symptoms.)

          If you dig through the information on this site you will see that adults should be tested about every five years, while teens and children more often – especially if they are going out for athletics. Many test their children annually, and of course any symptoms should institute another test, no matter how soon it has been since the last one. It’s always best to have the testing (Echocardiogram and EKG – with a stress test if indicated) done by a doctor and techs that are familiar with HCM, so they know what to be looking for.

          Finally a real quick thumbnail of me. At the age of four I was diagnosed with an ‘athletic’ heart and a murmur – but I was expected to outgrow it. Over the years symptoms appeared and grew more noticeable, along with other ailments, but things never quite fit together and there were always unexplained elements in my medical conditions. I was finally properly diagnosed at the age of seventy one. It was my fourteenth ailment. In the year and a bit since that diagnosis, I have picked up two more conditions making the current total sixteen – but I just keep on trucking down the road. I expect when they finally have a funeral for me everybody I know will attend – but me. I’ll be off somewhere having fun.


          • #6
            Welcome to the site. I know this is a difficult time for your family - but you are far from alone.
            I would suggest you get a base screening on the kids now and then again at age 10-12 then annually until the age of 25 then every 5 years.

            Get copies of all your echo reports and keep them so that you have them in hand the next time they get screened.

            If you have any additional questions let us know.

            Best wishes,
            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)


            • #7
              I did have my kids tested within a couple of months after my husband (now exhusband) was diagnosed. I know there are different opinions about how often you should have them screened, but I did take mine every January and the Pediatric Cardiologist would do an echo and ekg. Now that my son has been diagnosed, I am glad I took them every year.

              I just feel better doing it every year. That way you don't miss anything. Some doctors recommend every other year. But luckily my doctor said he felt that it would be better to check every year and now I am so glad he did. I will continue to have my daughter checked every year as well.

              Good luck to you. If I can help in anyway, please let me know. Thanks, Janet
              My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.


              • #8
                I appreciate all the support

                Thanks to all who replied. I will keep you informed and ask any questions that pop up. Thank you for having this site to help those who are in need.


                • #9
                  We're glad to have you here. I hope we can help you with your questions, concerns, joys, and fears. My husband has HCM and we did get my children tested right away. My kids are now 13, 11, and 9. So far they are all clear but I will continue to screen them annually until they're out of their teens. My husband's sister is clear of HCM. His brother doesn't see the need to be tested, not test his kids. His son is now 22 (as of yesterday) and he has symptoms that lead me to believe that he probably has HCM too. All I can do at this point is to gently suggest he get checked. Best of luck to you, your kids, your brother, and his child. We're here for you!


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


                  • #10

                    Please be aware that being diaagnosed wtih HCM makes you an automatic "decline" for life insurance, so please make sure you have some on yourself before you get screened.

                    Just to cover your financial bases, not because you won't be around because you will--the vast majority of HCMers live a full life span.

                    You can use the search function to find posts on screening, kids, and atheltics, insurance, etc.

                    take care,