DNA testing for a basketball player?

Hypertropic cardiomyopathy (HCM), Mr. Curry’s suspected medical problem is an “athlete killer.” I know, because one evening it laid me out on the gym floor, my heart racing at 265 beats/minute.

“Lucky” doesn’t come close to describing my good fortune (because, obviously, I lived through it).

My heart cranked at that ridiculous pace for more than 20 minutes. In the ambulance, the EMT couldn’t slow my heart nor control my plunging blood pressure. You see, at 265 bpm, the heart doesn’t pump — it “flutters”. So fast is the beating, that no blood gets in or out. That means no oxygen reaches the brain or any other vital organ. Clots form in the heart’s ventricle and these are usually fatal.

On my ride to the ER, two of the prescribed emergency measures failed. The young fireman attending me finally administered a heavy dose of morphine and waited for me to lose consciousness so he could apply the electric-shock paddles. “It’s not a pleasant feeling,” he told me.

I never did pass out, but my life certainly passed before me. “This is it,” I calmly told myself (thanks to the morphine). But there was no mistaking my presence on the doorstep of my own finality.

Miraculously, the beating slowed and my blood pressure rose. Tears of gratitude slid from my eyes.

“I can’t belive it, dude,” the young EMT said. “Nobody’s heart beats that fast for that long — especially somebody your age.”

I’m 57.

We are just beginning to learn about the scope and deadly nature of HCM. Dr. Barry Maron is certainly the world’s expert on the subject. His medical textbook, which I’ve struggled to read, is the definitive word.

HCM is an athlete’s killer because it is responsible for the sudden death of healthy-looking young athletes who inexplicably drop dead on football fields and basketball courts. It is a genetic disorder that can take many forms. A bump of muscle inside the heart’s pumping chamber that grows and blocks the flow of blood so it can’t leave. Or a burl of gnarled, erractic muscle fiber on the heart’ surface that disrupts the normal flow of electrical pulses that control it’s pulse, causing crazy, arrythmic patterns which result in letal ventricular tachycardia. Or an ultra-slow pulse that can’t get enough blood to where it is needed.

Thanks largely to Dr. Maron, we are now aware of this once-invisible killer that claims 1-in-500. Mostly males. Usually young. Curiously, athletes. Which is why Dr. Maron is on a mission to get high schools to test their young athletes for HCM before it can claim the 1,000 or so that die “mysteriously” during organized sports every year. The cost? About $60 per test — too much in this era of tight school budgets.

But certainly not too much for Mr. Curry. He can well afford it, but probably won’t. Mostly because 22-year-olds can’t fathom their own mortality and generally consider themselves bullet-proof.

Suppose he did test positive for HCM? He’d be urged to have a defibulator implanted in his chest (which I now have)and take daily medication to regulatehis heart rhythm (which I do).

Would you opt for this at 22? I probably wouldn’t. Especially with the prospect of $5 million in the balance.

But at 57, having been so close to cashing out, you couldn’t tempt me with 10 times that amount. No doubt.

It is an awful conundrum for the Bulls’ young superstar, a player loaded with talent on the verge of a rich free agency. What would you do?

And where would he turn if he had to walk away from super-stardom because of some genetic time bomb that might suddenly explode in his chest, just when all his dreams were beginning to be fufilled? Is it worth the risk? Only he can decide.

Right now, doctors have genetic tests to identify more than 2,000 diseases — many of
which they have no cures or treatments for. If a woman tests positive for the BRAC 2 gene, her chances of breast cancer are 90%. Her sole medical option is to have both breasts removed (which some women are doing). Ask yourself: Would you want to know if you were going to get Alzheimer’s in you lifetime if modern medicine had no effective treatments or cures? Would you want to know there was a strong possibility you could drop dead at 22 in the middle of a fastbreak in front of 20,000 cheering fans?

You can understand why the Bulls want to know. You can understand why Mr. Curry might not.

But what about if your employer wants to know in order to “protect his investment”? Or your insurer? Or your mortgage company? Or your fiance?

It’s coming. Already, personal privacy rights are being overwhelmed by property rights. You and I, like Mr. Curry, are being seen more as property than individuals with rights … whether we like it or not.

A word of hope (or perhaps, solace) for Mr. Curry. I made it though a lifetime of being an athlete — college and semi-pro football, martial arts, running, body builing, dance, and stupid hell-raising — with no noticable symptoms. At age 55 in a spin class, my genetic time bomb went off. If it weren’t for the luck (or grace) of two of-duty M.D.s being in my gym lifting weights, and the close proximity of the neighborhood fire company, I wouldn’t be writing this.

Today, I sill push myself. I’m addicted to tennis … still lift weights … still spin … still eat, drink, and make merry like any normal person. Only, I have this metal hockey puck in my chest that reminds me of my mortality every single day. And every morning that I awake, I am surprised and grateful. Each moment is a diamond.

Can you help me get in touch with Jim Punkre – the guy who wrote the above story who has hypertrophoc cardiomyopathy? My young son has just been diagnosed and we are struggling to cope with this news – I am looking to connect with others who have survived into middle age with this disease. Feel free to give him my email address and ask if he would drop me a note.

Thank you,

Suzanne Jarvie