This piece has been entered in the Patients Have Power Writing Contest run by Clara Health which is designed to raise awareness about clinical trials. I am passionate about this cause and hope it will raise the much needed awareness.
Up until a few days ago I was still trying to figure out just how to approach this piece. Although I have yet to take part in a clinical trial, I’ve spent the last year researching the different types and what might work best for my particular disease. Why? Research trials give patients such as me hope for cutting edge treatments and so much more. With not many options available and very little known about my disease, entering a trial can give me hope to not only find new treatments but to discover more about the disease. More so maybe the research that they do within trials will lead to preventing this disease.
In order to give you a little bit more of the history let me take you back twelve years. My wife and I had just arrived home from China with our 19 month old daughter. Life was good! We were starting our family and my wife and I had successful careers. My wife was now going to be a stay at home mom. Then all of a sudden the wheels ‘fell off the car’ and life started spinning out of control. After a simple surgery and a two-year journey of visiting at least 20 physicians and specialists, I had been diagnosed with Complex Regional Pain Syndrome a rare neuroautoimmune disease. The condition would leave me in such debilitating chronic pain day in and day out that it was a challenge just to function. My wife would end up going back to work as I was no longer able to work.
In the early years of my diagnosis I had lost all hope and my mental health was not in a good place. They call CRPS “the suicide disease” and I was finding out first hand why because the pain was so bad I didn’t know if I could go on. Thankfully I was able to work through things with help. I was finally able to find a care team that has been nothing short of amazing. To a degree you could say that my care team is my experience with the trial process. We have tried everything from experimental drugs to experimental therapies. What we’re lacking though is the research and the studies. Ten major surgeries later and trying the few treatments available to me and we are still no closer to finding a successful treatment plan.
What people need to understand is that the clinical trials are not only about new drugs for treatment! There are clinical research studies called observational studies that look at a patient’s disease or illness for genetic correlations or even improving upon current treatments. These are the type of trials that I am interested in because for years I have wondered if there is a genetic link to my disease. Or are there ways in which I can improve upon my current treatment plan.
Patients such as I hold a tremendous amount of value and knowledge to the researcher in those trials. What we are seeing is that the patient is starting to say that we need to be a part of the solution through the Patients Have Power movement. The patient who knows their own body and everything they are living through better than anyone is saying tap into our resources. Up until recently however I have had no power in helping to influence research. Companies such as Clara Health however are helping us to change that. Their belief in empowering the patient is giving the patient a voice. Patients do have power!