Hypertrophic obstructive cardiomyopathy

I was diagnoesed with Hypertrophic obstructive cardiomyopathy (HOCM), about 3 years ago. This is a relitivly widespread illness affecting about 1 in 500 people, just most people dont know they have it untill they die of it. It is also a major cause of suddern death syndrome, and is also belived to be a cause of cot death.

The way this illness works is it is a over developed muscle in the heart that restrics bloodflow. The symptoms include: Chest pains(not unlike Angina), dizzieness and fainting. Although most people do not show any symptoms at all, and some people can live normal lives. Sometimes the first time they know anything is wrong is when it kills you.

The way they treat this is with a Calcium channel blocker, along with regular check ups. The problem is with most people not knowing about it untill they die, there is not alot of reserch done into this illness.

Here are a few links:

CRY

BHF

More

What i am after is to know if anyone on ATS has this illness? Also what are your thoughts on this illness that can affect so many of us here on ATS?

Hey picklewash. Hang in and keep your chin up. We're with ya.

I don't have hypertrophic cardiomyopathy or any info on it except what you already seem to know. It certainly is NOT a death sentence.

...I do know you have a HUGE headstart by having a diagnosis - just learn to listen to your body, and do what it says. There always are cues - and 'pushing' yourself won't do you any good if your body is telling you to back off and slow down.

You can have a good life, and a long one too. ...Maybe better than most, because it will be more conscious than most.

Originally posted by soficrow
Hey picklewash. Hang in and keep your chin up. We're with ya.

I don't have hypertrophic cardiomyopathy or any info on it except what you already seem to know. It certainly is NOT a death sentence.

...I do know you have a HUGE headstart by having a diagnosis - just learn to listen to your body, and do what it says. There always are cues - and 'pushing' yourself won't do you any good if your body is telling you to back off and slow down.

You can have a good life, and a long one too. ...Maybe better than most, because it will be more conscious than most.

Thank you, yeh i have come to live with it. At the start it did get me down but now i dont mind it so much, it kind of comes in handy sometimes

I just thought i would raise awerness of it, and just to let people know if they do have it there not alone.

I do however belive there should be more reserch into it.

Originally posted by picklewalsh

I just thought i would raise awerness of it, and just to let people know if they do have it there not alone.

Always a good idea IMO - and good on you!

I do however belive there should be more reserch into it.

There may be more than you think. If you are up to it you might start researching - stick to the peer reviewed stuff tho. Many so-called rare and under-researched diseases have benefited GREATLY from a few interested (and obsessive) patients who review the literature and remind everyone of everything that has been done.

...The medical system tends to reward researchers who do new work, and there is NO glory in going back to collect all the old stuff together, even at the graduate level. So it doesn't get done, important work often is lost or forgotten - and sometimes the last overlooked link is found by someone like you, motivated by a totally personal interest.


Good luck and best wishes, whatever you do.

My husband was diagnosed with that 30 years ago... and let me reassure you that this delightful man is still alive (and sitting right across from me right now) and healthy and living a full and eventful pre-retirement.

It IS a scary diagnosis (I admit to crying when I learned about his.) Eat sensibly, do moderate exercise, find interesting hobbies and relaxations -- and get decent health coverage.

You'll do fine.

But it's an awfully scary thing to hear about!

Originally posted by Indellkoffer
My husband was diagnosed with that 30 years ago... and let me reassure you that this delightful man is still alive (and sitting right across from me right now) and healthy and living a full and eventful pre-retirement.

It IS a scary diagnosis (I admit to crying when I learned about his.) Eat sensibly, do moderate exercise, find interesting hobbies and relaxations -- and get decent health coverage.

You'll do fine.

But it's an awfully scary thing to hear about!

Thank you, it is good to here that your husband is doing well, let him know that i hope he has a good and long retirement. I myself have just joind a Gym and am enjoying going out on my bike.

I'm liveing well with it now. The only realy problem i had is getting life insurance, when i bought my house. After a long serch i did find someone, at a bit of a cost rise, but such is life.