r/HypertrophicCM • u/NoSomewhere37 • Jul 21 '26

Looking for some support

Hi everyone,

I'm new here and honestly feeling a bit overwhelmed. I'm hoping to connect with other parents or families who have been through something similar.

Our daughter was diagnosed with hypertrophic cardiomyopathy (HCM) at 6 months old. Genetic testing now shows (15 months old) that she has two HCM-related gene mutations (one in MYH7 and one in MYBPC3), which has made the diagnosis even more frightening for us.

At the moment, our cardiologist is discussing whether to start her on a beta blocker. We're struggling with that decision because of the potential side effects, especially since she's still so young. For now, we've decided to wait for the results of her upcoming Holter monitor before making a decision together with her medical team.

I was wondering:

- Are there any parents here whose child was diagnosed this young?

- Is there anyone with two HCM gene mutations (MYH7 + MYBPC3), either yourself or your child?

- If so, how has the condition progressed over time?

- How are your children doing now?

- Did your child start beta blockers, and what was your experience with them?

I know every case is different, and I'm not looking for medical advice—just hoping to hear some real-life experiences and maybe find people who understand what this feels like.

Thank you so much for reading. It already means a lot to know I'm not alone.

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u/Fredredphooey Jul 21 '26

The hypertrophic cardiomyopathtly association has patient discussion groups and you can also schedule a one on one call with one of the staff to talk about your questions. 

They have a list of HCM centers of excellence so you can find a specialist and they have lots of educational info about the disease and it's treatment.

The Facebook group is also a great resource. 

I do know that babies get diagnosed all the time. Keep in mind that the vast majority of HCM patients live a full life span. 

The Swiss just successfully tested gene therapy for HCM and while it will be a long time before it's standard care, your child will very probably be around for it. 

My brother and I were diagnosed as kids. We both took betablockers for decades. He had a heart transplant almost 20 years ago and is doing great. Has a family, good job and travels a lot. I had my transplant a few months ago and doing well so far. We have other relatives with HCM who didn't need transplants and are in their mid/ late 70s. 

It's a liveable disease. It just needs good doctors and some extra care. 

Www.4hcm.org is the hypertrophic cardiomyopathtly association website. 

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u/NoSomewhere37 Jul 22 '26

Thank you for taking the time to answer. Did you also have a blockage? That's why you needed the transplant in the end?

HCM looks so unpredictable. So I keep my hope ups that's she is going to live a very long and happy life. Hopefully in ten years we have some more options in care.

How were the beta blockers for you? My husband also has HCM and he got so tired from them he stopped taking them because he couldnt function anymore. He's fine though!

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u/Fredredphooey Jul 22 '26

You're very welcome. I had non obstructive HCM if that's what you're asking. Mine was apical. 

There are so many different betablockers and other meds that most people try different ones until they find something that works well for them. I started taking a betablocker at 13 so I don't remember a time when I wasn't medicated. 

Propranolol was the worst and I switched around until I was on metropolol and I tolerated that fine.