More misinformation

[JudyA]

Today, on the TV news, it was reported that the autopsy showed the cause of Jonathan Davis's death to be Hypertrophic Cardiomyopathy.(See the original article in the reporting sudden deaths section) The announcer could barely pronounce it (CBS Columbus 10TV) and then added "also known as athlete's heart"!!!! I was flabbergasted and wonder who gave them that info. HCM and Athlete's heart are NOT the same, right? The Columbus Dispatch hasn't printed an article about the autopsy results yet.

Is it appropriate for someone to contact the station and correct that statement? I don't have enough clout (or self confidence) to do something like that, But I think the college and his family deserve the true information. Any volunteers??

Judy

[scottonbike]

HI Judy

You made me learn something today. I thougth that "Athletic Heart" was one way you could describe HCM. I then googled "Athletic Heart" and found out that I was flat out wrong. Athletic Heart Syndrome (according to that web site) is the heart acting like a muscle and getting stronger with exercise. I would assume that Lance Armstrong must have a bigger heart then most people. Where as HCM is caused by Myocardial Disarray.
My guess is that people do not know how to describe what is going and saying an athletic heart is just easier.

Now that I think a little more about it, about 15 years ago I had a chest x-ray done and the Dr asked me if I played sports. I do, so he said I had an enlarged heart from that. I know now that I had HCM but I probably still had an enlarged heart from sports.

My suggestion would be to e-mail TV 10 and give them the HCMA web site in the e-mail. A few short sentences should do the trick.

Scott

[Cynaburst]

I wrote an e-mail to the News Director of the Station this morning as follows:

Dear Mr. Cardenas,

Yesterday your station ran a piece about the death of a local college basketball player earlier this month from Hypertrophic Cardiomyopathy. The story reported that Jonathan Davis died from Hypertrophic Cardiomyopathy, or HCM as it is commonly known, and the story went on to state that HCM was the same thing as “Athlete’s Heart.”

HCM is the most common hereditary cardiac disease and the most common cause of sudden death in athletes. It affects 1 in 500 people but it is NOT the same thing as Athlete’s Heart. Having an enlarged heart does not always mean a person has hypertrophic cardiomyopathy, In serious competitive athletes, particularly those in endurance sports such as distance running, cycling, and swimming, the heart will enlarge on its own. “Athlete's heart" is nature's way of adapting the heart to endurance exercises and is a normal condition resulting from strenuous training. HCM, in contrast, is a hereditary condition which puts athletes and others who have the condition at risk of sudden death. I, and many others with HCM, have a implantable device known as an ICD or implantable cardiac defibrillator which protects us from sudden death.

Because HCM is a hereditary condition which can have dire consequences and is NOT caused by strenuous exercise, I hope that you will act quickly to correct this misinformation and properly inform your audience about HCM and its causes. A family history of sudden death is a red flag for HCM. Other symptoms include shortness of breath, fainting, chest pain, palpitations and light-headedness.

While HCM is a serious disease, it is treatable, and if properly treated, a person with the disease can live a long and productive life. If you would like more information on the disease, please visit the Hypertrophic Cardiomyopathy Association on the web at: www.4HCM.org.

Thank you very much for your time.

Best regards,

Cynthia Burstein Waldman
HCMA

[Linda]

Judy & Cynthia - thanks for catching this and delivering such a great educational response.

Hopefully, they will get our website out there one more time - Linda

[Largehearted]

Great letter Cynthia and good catch Judy!

Leon

[Reenie]

Judy, thanks for letting us know about this. Misinformation is difficult to disspell at best. You did a great job of catching that bit.

Cyn, you're a natural letter writer. I couldn't have worded it any better. Terrific job. Please keep us posted on whether or not they respond.

[JudyA]

Thank you sooo much for sending that email, Cynthia!! I have worked 27 hours in the last three days and about to crash for a while- I know it is time for a little rest when I start getting more palpititations...

As a result I did not get to watch any news today-yet- I will check the paper when I get a chance. Thanks everyone for your responses.

I think we all hate to see the wrong facts, especially on TV- People who do not know any different, believe everything the news announcers say.

Stay well everybody, winter is not over yet! Brrrrr!

Judy

[LindaG]

Great letter. Very well written, informative, and to the point. I hope they clear up the misunderstanding.
I've heard many people refer to HCM as athlete's heart. There's so much we don't know!!!!!
LindaG

[Pam Alexson]

Very well done Cynthia and thank you.

I have a first cousin who is showing EKG changes, LVH, having syncope and ST inversion...the doctor she insists on listening to says she has an Athlete Heart Syndrome. As I understand it this syndrome is rare in women and the fact is, the girl only rides her bike on weekends. That has been the extent of her athleticism. She is being stupid and prefers to listen to him as it fits her denial.
Not only do people and uninformed journalists not know the difference but some doctors are the biggest offenders and think they know the difference and do not defer to an absolute specialist when they should for help.

Anyway... thanks for always helping to make a difference.

Pam

[Cynaburst]

I received this reply from Mr. Cardenas at the t.v. station this morning:

Thank you for this clarification. I will have one of our news managers review the information we aired and address this accordingly so that we don’t make the same mistake in the future.

Sincerely,

John Cardenas
News Director
WBNS-10TV/HD-21
770 Twin Rivers Dr.
Columbus, OH 43215

[JudyA]

Thank you so much, Cyn!! Your email was great and explained it so well. I am glad that he replied so quickly.

Judy

[Reenie]

It's nice to hear they cared and are going to address this issue. Hopefully they'll issue a correction statement.