Welcome to your 40's... you have HCM?

[mtlieb Brave Heart Find all posts View Profile Close mtlieb]

So anyway...

I've been following the boards pretty closely for several years now, and from what I've observed there is a large percentage of us who have been diagnosed and/or had our symptoms take a dramatic turn for the worse somewhere around our late 30's early 40's. Furthermore, it seems that us late-bloomers tend to make up the bulk of the obstructed HCM population with large gradients that required intervention (myectomy, ablation, norpace, etc.)

There are exceptions of course, since we obviously do have younger HCM'ers who are obstructed and older members who aren't. But in general it appears that the vast majority of us fall into two categories: We're either diagnosed young with a fairly thick septum but no obstruction... or we're diagnosed older with significant obstruction but with a lesser degree of hypertrophy than our younger counterparts.

What's the correlation here?

Jim

[Cynaburst Senior Member Find all posts View Profile Close Cynaburst]

I don't know what the answer is or why this is the case, but I definitely fit into this category. I was diagnosed in my early to mid 30s with no gradient at all, and a septum of 1.5 or so. Next echos were similar until I got pregnant at 35, and gradient worse, septum thicker. Now septum seems to be 1.8, but gradients have ranged from negligible to 120 or so. I failed beta blocker therapy and now am taking Norpace and beta blockers.

[cynthiaG Member of 1000 Post Club! Find all posts View Profile Close cynthiaG]

I think I was diagnosed around age 29 or 30. I would get occasional palpitations but did pretty well. I was 49 when I started getting AFIB (2 years ago), but other than that, I feel pretty good (but not as good in the hot, humid weather!). I think it varies so much with each individual...some symptomatic at an early age and others not until they are in their 40's or even later.

[Ronnie Major Contributor Find all posts View Profile Close Ronnie]

Good Question! I was dx, in my late 30's & stayed very manageable (with meds)-until, it was like I just woke up one morning & nothing would ever be the same again! I went from a constant gradient of 35 to 85 & then it kept getting worse, until within 6 months I had no choice, but to end up on the Table. What set this into motion? Why did I go for so many years being OK to being unable to function? I did not slowly get worse (noticeabley) just BAM.
My Docs have not been able to provide an acceptable answer, maybe we can!

[Pam Alexson Moderator Find all posts View Profile Close Pam Alexson]

There seems to be unknown triggers to the evolution or expression of the disease and multiple variants to the genetic patterms. Some get it young some get it in the middle years and some when they are older. Some also go undiagnosed their entire life. Some families find out when their loved ones suddenly die.
There is still so much unknown about this disease that we know so much about.

[Lisa Salberg HCMA CEO and Founder Find all posts View Profile Close Lisa Salberg]

While I see your point but I have to disagree. The point you are making is based on what you see here on a message board, not everyone within the HCMA is here on this board and you will notice that the cluster of people you see here are of similar age mostly due to the fact that this is the "Internet-information" generation. We are contacted via phone and mail by a different demographic and if we were to break down age of diagnosis vs the type of communications each uses you will see a big jump in the 30-45 yrs olds on the web. It is normally those who are affected themselves here on the web. Via the phone I speak to more parents and late teens and 20 somethings. By mail we hear from the over 65 group.

There is a jump in numbers of people diagnosed in the 30-40's however if you would have done an echo on these people in there teens you would have found HCM in a staggering number of them. The issue to me on this matter is how do we get people to diagnose earlier because if we can do that it appears..APPEARS... that we can protect the heart from unnecessary damage over time.

Again I am brought back to the A word... AWARENESS!!

That's my 2 cents...
Lisa

[mtlieb Brave Heart Find all posts View Profile Close mtlieb]

There is a jump in numbers of people diagnosed in the 30-40's however if you would have done an echo on these people in there teens you would have found HCM in a staggering number of them.

Lisa, thanks... this is actually the point I'm trying to make. In fact, I'd always assumed that the majority of us older folks have had HCM since our teens but simply weren't diagnosed until later. Most of us do recall having symptoms at a younger age.

My questions stem from the fact that those in our age group often experience a marked and sudden increase in symptoms at 40-ish years old, which seems to be the precipitating factor in either: a) first becoming diagnosed with HCM... or b) requiring more agressive intervention if already diagnosed. I was interested in hearing anyone's opinion on why this might be the case.

Thanks much.

Jim

[mtlieb Brave Heart Find all posts View Profile Close mtlieb]

To further our discussion...

I've been researching as many articles as I can find in order to determine the mean age of diagnosis for an HCM patient. Unfortunately, many journal abstracts do not contain this information and I don't have access to the full text. I'd especially like to find out what the mean age at diagnosis was for the Maron study (1101 patients) which is perhaps the largest study to date. One article by B.J. Maron, et al. in 2001 noted a mean age at diagnosis of 45 in a study of 480 individuals with HCM. This seems to back up what we see here on the board.

I find this interesting more than anything else, and decided to start this discussion due to the fact that so many of the folks going for myectomies of late tend to be in the same age group. Not a scientific study of course, but it opens up an interesting discussion.

Jim

[Linda Super Moderator Find all posts View Profile Close Linda]

It might also be the age when it becomes more acceptable to give in and acknowledge/admit to symptoms. Linda

[dughr Ventricle Find all posts View Profile Close dughr]

In some cases - MINE- I was diagnosed at 18 but since I was so invincible and knew it, I shrugged it off as doctors not knowing what they were talking about. I, nor anyone in my family knew anything about the disease, computers were still big enough to fill an auditorium so no quick information was available. It took until I was 37 to get so obstructed and symptomatic to get re-diagnosed. It took me another week to even recall I had been diagnosed 20 years earlier. Good thing mom kept my medical records, it is all in there including EKG's and a full work up--of course it was I.H.S.S then.

Doug

[mtlieb Brave Heart Find all posts View Profile Close mtlieb]

Thanks for your input Doug, you were actually one of the persons (among many others) who I had in mind as I was starting this thread. Although you were diagnosed at a young age, your symptoms (obstruction) became markedly worse at the age of 37 as you said. There are many such cases like this on the board, with or without a prior diagnosis.

Jim

[Reenie Super Moderator Find all posts View Profile Close Reenie]

My husband was diagnosed at 35 and now, at 40, he says he thinks the SOB and fatigue are getting worse. He isn't obstructed that I'm aware of. I think I finally have him convinced to go to a specialty center soon. I hope to get more answers soon.

Reenie

[Eileen2345 Member of 1000 Post Club! Find all posts View Profile Close Eileen2345]

My obstruction symptoms became much worse when I hit 40 years old. I was diagnosed when I was 30 yrs. old.

When I was 39, I noticed much more SOB and fatigue and then when I turned 40, the symptoms became much worse. By 41 years old, I could barely make through the day and I was really suffering.

Just my experience.

Eve

[angall Member of 1000 Post Club! Find all posts View Profile Close angall]

I was diagnosed when I was 20, but had symptoms when I was 17. Since I am OLD, this disease was very rare at that time. I had my first myectomy in 1973, then my second in 2000 when I was 47.

[purple_ness1 Barely Heart Find all posts View Profile Close purple_ness1]

just to thow this post all off balance
i was diagnosed at 7 but didnt realy get any bad symptoms till i was maybe 15 ,and from there on it just got worst
but hey im not 40 yet so could realy speak from my side of it

*margie*