My name is Rachel Colson. I'm a 33-year-old rare disease patient from Oklahoma. From a young age, I was constantly sick and absent from school, and in and out of the doctor's office far more often. While I was able to live somewhat of normal life, I still suffered from deeply debilitating symptoms and flare-up episodes that couldn't be explained. Over time, my symptoms spiraled out of control. I spent the majority of my life searching for answers regarding my health, and it took 20 years to get them. 

In October of 2016, I spent two weeks at Mayo Clinic undergoing extensive testing, where my rare disease went completely undetected and misdiagnosed. As I continued to worsen over time, I decided it was time to take matters into my own hands. To be my own advocate. In May of 2022, I traveled to Stony Brook Hospital to meet with a world renowned rheumatologist who specializes in rare, autoinflammatory disorders. In a matter of 3 months, I received my rare disease diagnosis and shortly after, started treatment.

After all those years of fighting for my health, I realized how important it was to share my story and assist other patients going through similar situations. I promised myself that I'd do anything to prevent another person, especially a child, from going through what I did. And I hope that by continuing to share my story and acting as a patient advocate, I'll be successful in doing so.