If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

newly diagnosed

Collapse

About the Author

Collapse

karen Find out more about karen
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Lisa Salberg
    replied
    Re: newly diagnosed

    Patrick -
    I would say you have a good handle on the genetics issues.
    Welcome to the board!
    Lisa

    Leave a comment:


  • VonMende
    replied
    Re: newly diagnosed

    o yes and one more thing. The genetic skipping of a generation is rare but can occur when an individual is a gene carrier but does not have evidence of the disease on the echocardiogram. the mutant gene does not actualy skip, the HCM gene in that individual does not express its self fully in such a way that we can not see evidence of the disease with the echocardiogram.

    take care

    Patrick Von Mende

    Leave a comment:


  • VonMende
    replied
    Re: newly diagnosed

    HCM is usualy a familial condition and represetns a geneticaly transmitted disease. And it is autosomal dominant, meaning HCM appears in about 50% of the people in each subsequent generation. Parents transmitting the diseas is therefore statisticaly about 1 in 2. There can also be sporadic cases where a person has HCM but no other relatives in the family are known to have HCM.
    Thanks for bringing that to my attention

    Leave a comment:


  • Sarah
    replied
    Re: newly diagnosed

    HCM is autosomal dominant. that means that each person with HCM has a 50/50 chance of passing it on to EACH child, each time. it is like flipping a coin each time you have a baby.

    the odds of having HCM when your parent doesn't but your grandparent does are very, very low but they exist. likewise, the odds of having it develop later in life are lower than finding it earlier.

    the recommendation is like reenie said, every 5 years in low risk groups and annually in kids whose parent's do have it (higher risk).

    s

    Leave a comment:


  • Reenie
    replied
    Re: newly diagnosed

    Patrick, you have the basic idea of HCM down, but you're a little confused on the facts. Please keep reading. You're off to a good start with gaining knowledge. Please, give Lisa a call. She, or your doctor, can help you straighten the facts out.

    Reenie

    Leave a comment:


  • VonMende
    replied
    Re: newly diagnosed

    that is correct they all should be tested HCM is known to skip generations at times and also is more commonly found in half of the children for example 4 kids 2 have HCM 2 do not its also possible and rare for all 4 to have it but even more rare for none of the 4 to ahve it. The people that HCM does not effect in the family gene still have HCM it is not decectable due to it not being severe enough for the tests to show it therefore that person becomes a carry and can transfer it on to the next generation.
    An enormous amount of people may have HCM but there are only certain ways to find it and most doctors will pass it off as being asma or a heart mumur. The best way to go is a speacialist.
    When i first went to see a doctor in november he said there wasnt any abnormalities and that everything was fine. Shortly after in december i was told to come in for they had found slight deviations. I went in again this time to a clinic and a different doctor this doctor said that i had a heart murmur, however he did refer me to a speacialist, due to the fact that he hadnt enough knowledge with HCM to give me a full diagnoses.

    take care

    Patrick Von Mende

    Leave a comment:


  • Lisa Salberg
    replied
    Re: newly diagnosed

    Ditto - to what Reenie said.

    Lisa

    Leave a comment:


  • Reenie
    replied
    Re: newly diagnosed

    Hi, Karen. The answer is yes, they should still be tested, but not as often as your own kids. There are people who don't test positive until they are adults even when they've been tested before. Some call this adult onset HCM. You sister should be tested every 5 years herself. Her kids should be tested that often too, but if she continues to test clear, then her children will most likely too. I think research and data is starting to point to the fact that some people can carry the gene without expressing it. It doesn't happen often, but it does happen. I hope that answers your question.

    About your daughter, I'm sorry to hear she's got HCM too. At least you have enough knowledge to help her get the quality care she needs and to help her make informed decisions on how to conduct her life, no competitive sports, etc. I'm sure that she will be just fine.

    Reenie

    Leave a comment:


  • karen
    started a topic newly diagnosed

    newly diagnosed

    I have one niece and several nephews. HCM is now diagnosed in my mother, myself and as of May 26th my 12 year old daughter. My sister feels since she does not have HCM, that her children are not at risk. Her boys were checked 4 years ago and were fine. One is now 15 and one is 20. Should she not still have her kids checked?

Today's Birthdays

Collapse

There are no members with birthdays today.

Working...
X