Neda's Story

Clinical Trial Story

I was diagnosed with ulcerative colitis when I was 37. It came as total shock, and I even told my doctor he was wrong. Reflecting to the weeks prior to receiving a diagnosis, I had significant symptoms, including weight loss, which should have been a clue. A few weeks after my diagnosis, I had a colonoscopy and changes in medications before my initial flare subsided. Over the next several years, additional changes were made with my treatment regimen and my condition was monitored. I had many unpredictable flares, but none were as difficult and stressful as the first. The difference with subsequent flares was that I knew what I was dealing with.

Eight years after my diagnosis, we moved to a city with large gastroenterology practices. While experiencing another flare in our new location, I was fortunate to have been quickly referred to an IBD specialist, who also conducted clinical trials for UC. I was familiar with this type of medical research as I am a nurse practitioner. But it is different if you are the patient participating. Knowing how something works is not always enough to reduce one's anxieties or fears.

For the last 20 years, I have participated in several different clinical trials, and not all treatments proved effective. I changed medications (some not in the context of a clinical trial) several times, including using infusions and self-injecting medication, along with oral medications. They worked for a while, and then it was on to another treatment option. During this time, I continued to work full time, travel on occasion, enjoy outdoor activities, and wondered if there would ever be an end to the unpredictability of my UC flares.

I am currently enrolled in another clinical trial. This is my third year on an oral research medication which has put my UC into what appears to be remission. Being without symptoms for such a long time is more than I would have hoped for several years ago. For this, I am very grateful for the research sponsors and my healthcare providers for making it possible for me to participate. I hope that such an opportunity could be made available for others who could benefit from the knowledge gained through this type of research.

Hometown: Georgia