**This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much needed awareness about the power of breakthrough research and clinical trials.
When I was first diagnosed with Crohn’s disease, I was TERRIFIED. I had never heard of the disease, did not understand what “chronic” really meant, or why the heck my immune system decided to fail me at just 20 years old. When the doctors were talking about treatment methods and I was trying to take everything in, my head was spinning and going a million miles a minute. It was exhausting, to say the least. So I did what anybody with access to the internet does these days, I jumped on the “Google machine” and starting researching. After I made myself even more terrified and diagnosed myself with a hundred different things in addition to Crohn’s, I decided to find sites that didn’t tell me I was heading for an early death.
As I started looking at more realistic websites with so much great information about Crohn’s disease, the one thing they all had in common was advertising for clinical trials. I remember thinking to myself, “I will never be someone’s guinea pig.” Fast forward a few years, when my disease progressed from mild to severe very quickly, and no medicine I was taking seemed to make a difference, my entire outlook on research and clinical trials changed. At one point in this journey, after starting my third biologic drug, my doctor told me I was running out of options and if the medicine I was on didn’t start working, I would be heading for surgery or they would need to refer me elsewhere for alternative options. This is where research comes in… Not even a year later, I was hospitalized with a small bowel obstruction. Thinking I had run out of options, I was preparing myself for surgery right then and there in the emergency room. What happened though, was nothing short of amazing. Since I had been told I was running out of options, there were not one, but TWO new biologic drugs on the market that we could try. TWO NEW OPTIONS in under a year.
When I started to think about how awesome it was to have more options, I realized that there were people out there trying out these new medicines to improve the lives of others. How cool is that? A clinical trial that helped a trial group of people get into remission is now helping out thousands of others who were running out of options. My mind starting churning as I processed that information until I realized that somewhere out there, there is a cure for Crohn’s disease. Not only Crohn’s, but rheumatoid arthritis, fibromyalgia, Hashimoto’s, multiple sclerosis, and so many more chronic diseases that affect people’s everyday lives. The only way to get to those cures in through research.
For someone that once thought she’d never ever be someone’s “guinea pig,” my how my perspective has changed. My Crohn’s is under control at the moment thanks to one of the new options I was given thanks to clinical trials and research. My husband and I are hoping to grow our family in the next year or so and me and my future baby will be a part of research to help any future mommas out there who are thinking about having babies of their own while on biologic medication.
The amount of research being done to help those of us with autoimmune diseases is fantastic. If you don’t believe me, take a look around Clara Guides for treatment information, clinical trial info, and so much more. As much as we need science to help find cures, we also need patients, because patients have the power.