As a father, there is nothing more difficult than watching your child suffer.
In 2001, my son was just 15 months old and very, very sick. He would spike 106-degree fevers twice a day. He literally couldn’t move a muscle because of the pain. He spent a month in an intensive care unit before they could figure out what was wrong with him.
A pediatric oncologist finally determined that my son has a rare disease, systemic onset juvenile idiopathic arthritis, a form of childhood arthritis.
My relief at learning the diagnosis quickly turned to anxiousness. My son had a rare disease and no one knew what to do to help him get better. At the time, was there was so little known about how to treat my son’s condition. There were a couple of medications that had recently come on the market, but only one was approved for use by children and it was for children over four. So we were forced to make a decision about my child’s health with no information to go by.
I decided that situation was unacceptable and something should be done about it. From that day forward, I decided to try to find answers so that I could make more informed decisions. This whole idea of patient-centered research, research that focuses on what the patients’ want, became a passion.
Not long after my son was born, there was a research network started called CARRA, the Childhood Arthritis & Rheumatology Research Alliance. They asked me to join them at meetings and asked for my input on treatment decisions. I was very reluctant to speak and intimidated because I felt that I wasn’t qualified. But a doctor said to me, you’re a business owner, how do you know what your customers want? I said, I ask them. The doctor said, that’s what we’re doing; you’re our customer.
I’m invited to speak at a lot of conferences, like at health advocacy groups, to explain to people why it’s so important for patients — and their families — to get involved in research. When patients get involved, the research and results include their perspective and are more meaningful.
Now, PCORI, the Patient-Centered Outcomes Research Institute, is changing the culture of research. Through an award from PCORnet, PCORI’s National Patient-Centered Clinical Research Network, doctors and researchers, along with patients and caregivers are creating infrastructure around patient-centered research with a focus on rare diseases.
But there are a lot of patient groups that are isolated. Further collaboration would be a terrific byproduct of PCORI work, and not just for researchers but for patients as well. Research empowers patients to get involved and engaged.
In the beginning you start out thinking, as any parent in this situation would, boy, if I could take this on and have him be okay, I would change places in a second.
As time passes your perspective changes. The work I’m doing won’t directly help my son, because this medical research process takes so long. But if, God forbid, he has a child with a condition like this, he would be spared what we went through. You’re trying to make it better for the next generation.
Today, my son is a teenager and, fortunately, he is a success story. He doesn’t want his condition to define who he is. He is able to do everything he wants, he plays ice hockey, and he doesn’t have a tremendous amount of limitations. Compared to his brother he’s not as flexible, and he does feel pain and fatigue more often.
And I feel that going through this, I’ve become a better advocate for myself, my kids, and for everybody that I know. You can’t take for granted that you are receiving the best care for you, you have to ask questions, and share what’s important to you. You have to remember that nobody cares about your health as much as you do.
Photo credit: Pixabay.com
