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
If this is your first visit, be sure to
check out the FAQ by clicking the
link above. 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. As a good practice screen names should not be "full legal names" as we can not full assure your privacy from search engines if your FULL name appears on the messageboard
All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination.
Once your diagnosed, it is virtually impossible to get life insurance. I had posted quite awhile ago witha question regading my children and possible future diagnosis. I was told to buy as much insurance as possible now to protect tham later.
Please check the archives. I'm sure there is information about insurance .
if you don't have an official diagnosis yet, run to the nearest agent and see if you can get some. otherwise, the only life insurance you will be able to get would be through a group policy at a job. some companies have "portable" policies that you can take with you when you leave, too.
if you have kids, get them lots of life insurance now b/c each one of them has a 50/50 chance of having HCM and you don't want to screen them first and then be stuck.
sometime people get to the board while the doctor is handing you off for a second opinion or you are waiting for more tests. if someone has written "hypertrophic cardiomyopathy" in your medical file, then that is as official as it gets. if you lied on your application now, they can always pull your file and check. no good.
the problem is that HCM is a very broad term and the vast majority of us live a long, full life, live the average life span or more. However, there are a few who need new hearts, so the entire category is struck from coverage.
you should also see a specialist; see our links page for more info on the heart centers and read the archived posts or ask or call Lisa for more. referrals are done over the phone; not on the board.
Hi Bala,
We just got off the phone...but I thought I would answer here as well. MAXIMIZE your employer sponsored life ins. and ask if the policy is "portable" meaning if you leave the job you can take the coverage with you.
It is also a good idea to get coverage BEFORE you get screened...in your case that was not possible but for your family members it will be.
Be well,
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