The Conference

Today was the conference about familial hypertrophic cardiomyopathy (HCM). Let's see if I can summarize this complex condition in a few sentences: The muscles of the heart expand, putting stress on the heart itself and interfering with the electrical impulses that control blood flow and heartbeat. The symptoms may include irregular heartbeat, shortness of breath, dizziness, and chest pain. It is the most common heart condition that leads to sudden death among young athletes (remember Lucas and his father Dan in One Tree Hill? HCM is why he was advised not to play basketball). When talking to some of the families at the conference, I'd sometimes bring up this HCM reference in a popular TV show, and most of them were glad that HCM was getting attention in the media. They said it was encouraging that the show spread awareness of the condition, and that it advises young athletes to get tested and be careful.

The main thing that I took away from the conference was the importance of clear communication and knowing your audience. As a genetic counselor, my job would be to translate complicated medical data and highly specialized jargon into clear information that any patient can understand, without making them feel like I'm talking down to them. This is more complicated than you might think - it requires not only a detailed and extensive knowledge of the science behind the concepts being explained, but also stellar speaking and teaching skills. If I explain something and the patient doesn't understand it, I need to come up with a new way of explaining it, and fast. The conference attendees were, admittedly, probably far more knowledgeable about HCM than the average patient who might come in to the clinic, but I still felt that some of the presenters were talking above their heads. I felt that they were there for personal answers, not medical answers. They're well acquainted with the symptoms and treatments; it seemed like they were more interested in the personal stories of patients with HCM, which were positive and gave them hope that all is not lost. That's just my opinion though (based on the questions asked after the presentations, and talking with families on the way to and from the clinic).

I also felt more than ever that a condition does not have to define a person. There are people with life-threatening illnesses who manage to have happy, productive lives, and that is something to keep in mind if and when bad news has to be broken. It was a good reminder that I know will stay with me.