Positive Dominant Mybpc3 gene carrier, no HCM/ competitive sports?

Posted by healthgt09 @healthgt09, Oct 22, 2019

Hello everyone, want to gain some knowledge/ advise/ stories on being a dominant carrier but otherwise healthy non diagnosed HCM confirmed by ECG, Echo, physical exam. Would you let your son/daughter still play competitive sports as long as all tests other than being a carrier were normal? Anyone in same situation that has allowed their kids to keep playing sports?

I am a carrier – but I was told confirmation of carrier only status can only be confirmed by MRI, which I had done to finalize that confirmation. I am 51 years old, however. My son was just diagnosed with HCM this past year and he is 29 years old. Very active in sports throughout high school, but that was because we had no idea this gene was in our family. Based on The age of your child (your statements make it sound like high school or younger?) I would not trust carrier status confirmation by echo and ECG only. It may just be too early in his lifetime to confirm carrier status at all.

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@kdm1028

I am a carrier – but I was told confirmation of carrier only status can only be confirmed by MRI, which I had done to finalize that confirmation. I am 51 years old, however. My son was just diagnosed with HCM this past year and he is 29 years old. Very active in sports throughout high school, but that was because we had no idea this gene was in our family. Based on The age of your child (your statements make it sound like high school or younger?) I would not trust carrier status confirmation by echo and ECG only. It may just be too early in his lifetime to confirm carrier status at all.

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Thank you for your reply, yes high school and only positive through genetic testing. MRI is yet to be done since this is new. If I may ask, how is your son doing with the condition now. What sports did he play in high school? Does he have limitations in life?

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Hello @healthgt09,

Welcome to Connect. I’d like to share a few resources that might help shed some more light on your concerns.

MYBPC3 mutations are amongst the most frequent causes of hypertrophic cardiomyopathy. In some studies, MYBPC3 mutants have been associated with a less severe form of HCM with late clinical onset, while other studies have described MYBPC3 mutations to be associated with more severe disease onset, increased LV hypertrophy, and increased frequency of heart failure and sudden cardiac death. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0187948

According to The ACC – American College of Cardiology, "Current guidelines recommend restricting competitive sports participation for individuals with HCM to low-static/low-dynamic sports such as golf or bowling,1-3 and vigorous recreational exercise has also been recommended against.4 However, as noted in these statements themselves, there are few data and these recommendations are based predominantly on expert opinion.” https://www.acc.org/latest-in-cardiology/articles/2017/02/20/08/06/sports-and-exercise-in-patients-with-hypertrophic-cardiomyopathy

I'd like to invite into this discussion, a few members who can share their insights: please meet @mommiesboy1 @ccubed @knecht @carjes @margie11 @ronaldpetrovich @vivian88 @jshah and @marlak72
I sincerely encourage you to view these Connect conversations and videos about HCM and genetics:
https://connect.mayoclinic.org/webinar/video-qa-about-cardiomyopathy/
https://connect.mayoclinic.org/webinar/video-qa-about-congenital-heart-disease/
https://connect.mayoclinic.org/discussion/my-11-year-old-was-diagnosed-with-hcm/

You may also wish to view this Mayo Clinic webpage, and read some of the younger HCM patient stories:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/care-at-mayo-clinic/mac-20350208
@healthgt09, I ‘d really like to get to know you better – are you a competitive athlete? Has anyone in your family been diagnosed with HCM?

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@kanaazpereira

Hello @healthgt09,

Welcome to Connect. I’d like to share a few resources that might help shed some more light on your concerns.

MYBPC3 mutations are amongst the most frequent causes of hypertrophic cardiomyopathy. In some studies, MYBPC3 mutants have been associated with a less severe form of HCM with late clinical onset, while other studies have described MYBPC3 mutations to be associated with more severe disease onset, increased LV hypertrophy, and increased frequency of heart failure and sudden cardiac death. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0187948

According to The ACC – American College of Cardiology, "Current guidelines recommend restricting competitive sports participation for individuals with HCM to low-static/low-dynamic sports such as golf or bowling,1-3 and vigorous recreational exercise has also been recommended against.4 However, as noted in these statements themselves, there are few data and these recommendations are based predominantly on expert opinion.” https://www.acc.org/latest-in-cardiology/articles/2017/02/20/08/06/sports-and-exercise-in-patients-with-hypertrophic-cardiomyopathy

I'd like to invite into this discussion, a few members who can share their insights: please meet @mommiesboy1 @ccubed @knecht @carjes @margie11 @ronaldpetrovich @vivian88 @jshah and @marlak72
I sincerely encourage you to view these Connect conversations and videos about HCM and genetics:
https://connect.mayoclinic.org/webinar/video-qa-about-cardiomyopathy/
https://connect.mayoclinic.org/webinar/video-qa-about-congenital-heart-disease/
https://connect.mayoclinic.org/discussion/my-11-year-old-was-diagnosed-with-hcm/

You may also wish to view this Mayo Clinic webpage, and read some of the younger HCM patient stories:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/care-at-mayo-clinic/mac-20350208
@healthgt09, I ‘d really like to get to know you better – are you a competitive athlete? Has anyone in your family been diagnosed with HCM?

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All this information is great I am fortunate to find this group. My husband late 30’s is a carrier and has HCM, genetic testing revealed our teenage son is dominant gene positive carrier but he has had ECGs, echos showing healthy heart, no muscle thickness no abnormalities. Very involved in sports so trying to find information or others experiences with decisions they have made with allowing their kids to still play the sports they love if they only carry the gene but are not diagnosed with HCM. I feel that if this is a risk factor information would I be harming his mental health by taking this away from him. Will the doctors consider letting him continue to play sports if he carries but has healthy screenings every year like other kids?

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@healthgt09

Thank you for your reply, yes high school and only positive through genetic testing. MRI is yet to be done since this is new. If I may ask, how is your son doing with the condition now. What sports did he play in high school? Does he have limitations in life?

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My son played baseball and basketball in high school and continues to play on adult softball leagues now. His HCM cardiologist had him wear a heart monitor while playing softball, to see how his heart was reacting to the sprinting between bases. While his heart rate increased, it did not increase to a dangerous level, so for now, he is cleared to play softball. There are certain sports that are potentially more threatening than other sports. Any sport that requires a sprint (soccer, basketball, baseball, football) are the sports they say to take it easy with or not play at all. My son is doing well and his HCM is not yet at a super dangerous spot (his thickening isn't severe). His ventricle will continue to enlarge as he gets old, but at what rate is unknown. He has to have a heart MRI once per year to measure the thickening progress and each year they will re-evaluate whether or not he can continue to play sports. He has decided to quit playing his pick up basketball games, just a precaution, since he loves baseball and only likes basketball 😉 My sister is having open heart surgery in a month for HCM. Her case is much worse, as is a first cousin who should have the surgery, but is too anxious about it to commit. Each person in the same family can have different intensities of the defect. So, even with confirmed HCM, it doesn't mean that anything may ever have to be done. Just depends on the growth rate. I would really recommend a heart MRI, which could clear him entirely, like it did me. That would answer a lot of questions for you. Also, your son should be going to a HCM specialty office. A lot of the "regular" cardiologists are not super up to date with HCM. You will get much better information and direction from a HCM cardiologist.

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@kdm1028

My son played baseball and basketball in high school and continues to play on adult softball leagues now. His HCM cardiologist had him wear a heart monitor while playing softball, to see how his heart was reacting to the sprinting between bases. While his heart rate increased, it did not increase to a dangerous level, so for now, he is cleared to play softball. There are certain sports that are potentially more threatening than other sports. Any sport that requires a sprint (soccer, basketball, baseball, football) are the sports they say to take it easy with or not play at all. My son is doing well and his HCM is not yet at a super dangerous spot (his thickening isn't severe). His ventricle will continue to enlarge as he gets old, but at what rate is unknown. He has to have a heart MRI once per year to measure the thickening progress and each year they will re-evaluate whether or not he can continue to play sports. He has decided to quit playing his pick up basketball games, just a precaution, since he loves baseball and only likes basketball 😉 My sister is having open heart surgery in a month for HCM. Her case is much worse, as is a first cousin who should have the surgery, but is too anxious about it to commit. Each person in the same family can have different intensities of the defect. So, even with confirmed HCM, it doesn't mean that anything may ever have to be done. Just depends on the growth rate. I would really recommend a heart MRI, which could clear him entirely, like it did me. That would answer a lot of questions for you. Also, your son should be going to a HCM specialty office. A lot of the "regular" cardiologists are not super up to date with HCM. You will get much better information and direction from a HCM cardiologist.

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@kdm1028 Thank you so much for sharing your story and knowledge with me, glad your son is doing well and still enjoying the things he loves. Was it a hard decision as a parent to keep letting him play? My son currently does not have HCM but is gene positive like I said.( he has a chance of not developing) I’m struggling on making a decision to let him continue football, or taking something he loves away and take the chance of it harming his mental health. I’m hoping the doctors will work with me like your son did and just not take him away from living a normal life. We do see a great HCM cardiologist. Once again thank you so much for sharing.

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I have a niece who is very active in soccer and dance competitions.. This is her thing! She became symptomatic playing soccer several times, palpitations, faintness. Her tests revealed supraventricular tachycardia. She has a normal sinus rhythm at all other times. Her cardiologist did echocardiograms and MRIs. Eventually, she had an intraventricular monitor/defibrillator implanted. Her quality of life very much revolves around sports, all her friends are on her teams. I am a retired physician. We talked about it whether she should continue her sports. I believe quality of life includes being able to do what you love. I told her to keep on doing her sports, even though there is a small risk of sudden death. The defibrillator will fire if needed. I believe life is only worth living if it allows you to do what you love and are good at. She wins prizes dancing and her team is a winning soccer team nationally. She is a very bright beautiful young lady. Her mother, of course, is extremely anxious. The young lady is 18 and is capable of making informed decisions. I told Mom to not transmit her own anxiety to her daughter.

AJ

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@galevin She is a beautiful strong young lady, thank you for your story, I’m so thankful for all of you. You are so right about living life doing the things you love. Your niece is very lucky to have all of you as a support system. Once again thank you for sharing.

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I forgot to mention that I was recently diagnosed with hypertrophic cardiomyopathy (apical variety), a very rare form fo HCM. I may need a surgery and am going to Mayo Clinic. I am only 76 yrs old. Never had problems as a youth, but I do have severe cardiac vessel stenosis, one 4 CABG and 3 stemts

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@healthgt09

@kdm1028 Thank you so much for sharing your story and knowledge with me, glad your son is doing well and still enjoying the things he loves. Was it a hard decision as a parent to keep letting him play? My son currently does not have HCM but is gene positive like I said.( he has a chance of not developing) I’m struggling on making a decision to let him continue football, or taking something he loves away and take the chance of it harming his mental health. I’m hoping the doctors will work with me like your son did and just not take him away from living a normal life. We do see a great HCM cardiologist. Once again thank you so much for sharing.

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My son didn't have any symptoms of HCM until he was 28 years old. That is why a one time good report on does not mean that he couldn't develop this later in life. My sister didn't have any noticeable symptoms until she was 49 years old. Having yearly check-ups with the HCM cardiologist is very important! My son's cardiologist is allowing him to continue sports for now, because of the measurements they were able to get on the heart MRI and also because they were happy with the results of the heart monitor he wore while playing softball. In my opinion, a good decision without a MRI cannot be made. My son will have yearly MRIs to monitor the thickening. Each year the cardiologist will make a decision based on that, whether or not he can continue with his sports.

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