Hcm in teenagers

Posted by carjes @carjes, Apr 1, 2017

Hello. I am a mother who was diagnosed with hcm 4 years ago and now my 15 yr old daughter has been diagnosed with hcm. Which was confirmed with genetic testing. I also have three other children which 3 out of the 4 have the hcm gene and one is symptomatic at this time. I would like to see if there are other families like us out there and just find out how they helped their child deal with this diagnosis. It has been very difficult for my daughter and just looking for some advice. Thanks

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Jamie Olson | @jamienolson | Apr 2, 2017

Hello @carjes, Welcome to Connect and Thank you for posting your concerns here. I bet this has been a tough road to travel but props to you for searching out other like-minded members to discuss HCM with.

I would like to introduce you to member @traceysmith who was 16 years old when she was diagnosed and also members @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @FrancineFafard @lisa7 @lucindag @23273333 @li @margie11 @fishinglady @lisa7 @lisab62 @debcrawford @onewholovesrock @1949 @mbcube whom I hope will share their experiences with you as well.
Can any of you tell @carjes- have any of your children been confirmed with HCM with genetic testing?

Also, here is a link to a webinar on HCM that you may find helpful- http://mayocl.in/2dmWhdI

Cynaburst, Alumna Mentor | @cynaburst | Apr 2, 2017

Hi @carjes -Your story is very familiar. I am the daughter of a man who had HCM, and we lost my grandfather and uncle to HCM. I have a teenage son who is followed very closely so I know exactly of what you speak.

Since HCM is an autosomal dominant condition, 50% of the offspring of an individual will also carry the HCM gene. Approx. 80% of those people will go on to be diagnosed with HCM over the course of their lifetime. A great place that you can find support and find other families with HCM kids is the Children's Cardiomyopathy Foundation - http://www.childrenscardiomyopathy.org. They just last week had a webinar about genetic testing and I know that many families are in the same boat. They also have a peer support program for teens. It would be worth calling them up and joining if you haven't already.

Another place where you can find support is the Hypertrophic Cardiomyopathy Association - http://www.4hcm.org.

Both groups have online message boards and Facebook groups.

One thing that I want to point out to you is that this is a public internet forum that anyone can see. With genetic diseases, especially when we are talking about our children who may not ever develop this disease, even if they carry the gene, we also need to consider their privacy, future employment, and how this might relate to their ability to procure health insurance, life insurance, etc. Especially since things in these areas are changing so rapidly with the current political climate.

If you would like to discuss privately, feel free to send me a private message on this board.

All the best,

Cynthia

Margie11 | @margie11 | Apr 3, 2017

Hi @carjes, you're certainly in the right place in this forum. I've only been here a short time, trying to keep informed since my father had a septal myectomy. We had never even heard of HCM when he had to have his surgery, and so it was a very frightening time for our family. Just this forum alone would have made all the difference because knowledge is power. Stay connected and stay strong, our thoughts are with you!

Colleen Young, Connect Director | @colleenyoung | Apr 4, 2017

Coincidentally, @margie11 @cynaburst and @carjes, we have just scheduled a video Q&A with Mayo Clinic expert, Dr. Lester on Hypertrophic Cardiomyopathy & Genetics. Hope you can join us on April 14 at 12:30 CT.

Here's more information about the event and where you can post questions: http://mayocl.in/2nTVJQs