ACC updates

[Lisa Salberg]

One day down two to go...
Yesterday there were several posters presented on HCM to quickly highlight those of most importance to the daily lives of those with HCM I would have to say 2 posters were most important:
The poster by M.Maron regarding the effects of gradients of more then 30mm drew a great deal of attention (info in this can be found on a seperate thread on this boardhttp://www.4hcm.org/phpBB2/viewtopic.php?t=1436 ). This brought up a great deal of discussion from several prominant surgeons in HCM - I suspect you will soon see a paper on the long term outcomes of pts post myectomy with an attempt to link improved survival rates to long term outcome. Many people are looking at this within the Ablation community... I look forward to a balancing of data to help pts and care providers have the most up to date data to make a treatment choice.
Second was a poster by M. Ackerman (Mayo) re genetics: Prevalence and spectrum of a particular group of mutations... this data show that genetic information is not leading us to a clear picture of what we can expect from that form of the disease. Those with "bad" genes have good outcomes..and those with "good" genes can have bad outcomes...in other words it was clear that much more work is needed to find out the true meaning to genetic infromation in HCM.
There were some other interesting posters but I suspect the 2 I have mentioned will have the greatest impact on future research and treatment in there respective areas of the disease.
More later from Chicago!
Lisa

[Sarah]

Hi,

"Poster" is conference-ese for "short presentation" (as opposed to a full-fledged "session" that is a bigger, long presentation.

Today is "HCM Day" (all of the HCM sessions are today). So I'm sure Lisa will be inundated with data.


later,

S

ps all of us have sore feet!

[kathyn2]

I don't see the info about the poster on a different thread. Where do I look? thanks, Kathy

[mtlieb]

Lisa,

Where would i find the notes presented by Dr. Maron on the effects of gradients over 30mm? I would love to review this if it is available.

Thanks!

Jim

[Sarah]

Hi,

Lisa is referring to presentations that have happened at the American College of Cardiology conference --not "posts" here.

S

[kathyn2]

Sarah, Lisa wrote this in the first paragraph or post on this page:

>>The poster by M.Maron regarding the effects of gradients of more then 30mm drew a great deal of attention (info in this can be found on a seperate thread on this board). >>

So we are looking for the separate thread on this for more info. I haven't seen it anywhere. Kathy

[Cynaburst]

I think Lisa is referring to an old thread about the article that M. Maron published on this subject a month or two ago. I think it is in this section of the board, and it was an article about obstruction.

[kathyn2]

Cyn, I think I know what you are talking about. thanks. How is your baby? Kathy

[Sarah]

Hi guys!

I am not wrong. Sorry, but true. Lisa is NOT referring to a "post" Dr. MM made to the board. She is talking about a presentation given at the American College of Cardiology Conference this weekend. These short presentations are called "posters" because they literally put up a giant poster and people gather around and the doctor with the poster talks about it.

You will not find this info on the message board.

Sorry my first explanation wasn't clear.

S

[Robert Hartwell]

Sarah,

We realize that Dr. Maron did not "post" to this board, but Lisa's first post to this thread indicates that more details about Dr. Maron's presentation to the ACC can be found "on a seperate thread on this Board." Please reread her first post, especially the part in brackets.

Thank you for clarifying the term "posters"

Bob

[Tim Stewart]

The poster by M.Maron regarding the effects of gradients of more then 30mm drew a great deal of attention (info in this can be found on a seperate thread on this board (http://www.4hcm.org/phpBB2/viewtopic.php?t=1436)). This brought up a great deal of discussion from several prominant surgeons in HCM - I suspect you will soon see a paper on the long term outcomes of pts post myectomy with an attempt to link improved survival rates to long term outcome. Many people are looking at this within the Ablation community... I look forward to a balancing of data to help pts and care providers have the most up to date data to make a treatment choice.

Dr. Maron's information that Lisa refers to above can be found on this message board HERE: Effect of Left Ventricular Outflow Tract Obstruction on Clinical Outcome in Hypertrophic Cardiomyopathy (http://www.4hcm.org/phpBB2/viewtopic.php?t=1436)

[Sarah]

this is what I get for posting when I'm half asleep.

thanks.

S

[kathyn2]

and that post that Tim mentions is the one that Cynaburst referred me to. I understood! Thanks for clearing it up again. Now I am sure we all understand. Kathy

[mtlieb]

Thanks for the link to the article, although now i kinda wish i hadn't read it. :shock: I'm 40 years old, my gradient at rest is 100mm, the meds are kicking my butt, and this probably wasn't the best time for me to read the darn thing :(

[kathyn2]

Yes, it is discouraging. It makes me nervous also. And the sad thing is, we don't even know that if we have surgery or ablation whether it prolongs your life or not. You would think they would have included that in their studies. After reading it, I am seriously considering alcohol ablation to hope it extends my life.

[Linda]

Hi to all, lucky for me, I don't have a laptop. Sharing a room with Lisa at ACC was great because I knew she was answering posts and reading them to me, keeping me up to date with the message board. Now, I'm home - finally - and I have 123 posts, or so on my computer to catch up on. This post has really generated the discussions! Let me just say that the info posted originally by Lisa was meant to excite about the research on the horizon. When info is presented as research findings, it is important to keep it in perspective. That is difficult to do if only bits and pieces are read. Then we have to remember that early statistics have to be followed up with long-term results. We have to consider how it applies to each individual, what is their age? how symptomatic were they? what other medical problems did they have to complicate their recovery/treatment/progress? I know Lisa will be posting more info on her take on the info presented, but I hope, in the meantime, our readers will not dwell too much on numbers and statistics. Remember that everyone is different and each treatment plan and time frame will be individualized. I look at the idea of improved outcome with reduced gradient as one reassurance when making the difficult decision about whether or not to undergo a septal reduction. Since Lisa was the one who actually attended the presentation, she will be giving us a better understanding of what was presented, but don't be too worried yet about trying to interpret what the experts are still studying. As for the article posted previously(Tim highlighted it for us), it was an abstract, not the entire article, so keep that in mind. As for "good genes", "bad genes", I think we're all going to learn that this was a "bad" way for them to be described in the first place :? . Now, the good news, research is moving forward. Kathy and Jim, sleep well tonite. Linda

[Art Geddes]

hello all,

I was able to go to our local library and get the Jan 23 issue of th eNew England Journal of Medicine. This is the one spoken about here. Usually it can not be checked out but you can read it there. It is very informative.
Art

[Lisa Salberg]

Opps sorry for all the confusion.. I must admit that it is hard to be in the booth, read posters, go to sessions and also meet and speak with so many doctors who are treating HCM pts around the world..then go back to the room and report on the days events.. I will have to refine my system to avoid confusion in the future :? .

I will update more soon...honestly I am a bit under the weather again..no voice again :roll: ... Those who know me understand this is a great hardship :wink:
more soon,
Lisa