When I was first diagnosed with Hypertrophic Cardiomyopathy at the age of 26, I won’t lie, I was devastated. I had lived with HCM my whole life, since my mother had it and my brother and I were followed at Boston Children’s Hospital until we were 18. But getting a diagnosis of a potentially fatal condition is never easy, even if the disease has been part of your daily life for as long as you can remember.
In many cases, as it was in mine, you’re suddenly thrust into a whirlwind of doctors’ appointments, lifestyle changes, and medications. In a very short amount of time you can begin to feel that your life is no longer your own. You’re just going along, playing by a new set of rules trying to keep some sense of control.
And in so many instances, it is at this time, when you feel like you are in crisis that you or your doctor might bring up the idea of participating in a clinical trial. Now, don’t get me wrong, I completely understand when you get to a point where your life has taken a dramatic turn in the wrong direction, that you’ll be thinking that you’ll try anything to just have your old life back. But this moment of crisis can no longer be the only time research is brought into the conversation.
There are research trials going on all the time, all over the world. Just take a look at ClinicalTrials.gov and you’ll get an idea of what’s going on.
We need to change the where and when of this conversation, bring it out of the doctor’s office and into the public awareness. Clinical trials and research in general is how new conditions, genetic anomalies and therapies are discovered and brought to the world. Without research we’d still be living with the assumption that illness was caused by a curse or the “evils” of someone’s ways.
Research is the lifeblood of medicine
and without it countless people would continue to suffer and die from illnesses that now have cures. And participating in research for someone diagnosed with a serious illness or condition can make you feel like you have your voice back. It can empower you. You’ve now taken control of something that has made you feel like you’re a puppet and the illness holds the strings. It allows you to look at the illness and say “Enough! I have a voice and I’m going to use it!”
And while not all clinical and research trials will end with a cure or even leave you on the road to recovery, they may give you a sense of having done something positive. It may not be you that reaps the benefits, but someone, someday will and you were a part of making that happen.
Let me just end by saying that these are my views about participating in research. This is my “story” but it might not be yours. That’s okay. It’s a very personal decision that you alone can make. That being said, it’s not a decision you should make without first consulting with your physician. So, don’t make the decision for me, don’t make it for your doctor, make it for you. You have a voice.