VF in the News

Nicole’s Story

My name is Nicole. I recently had the privilege of sharing my journey with Wegener’s granulomatosis for the Discovery Health Channel’s show “Mystery Diagnosis”. I have always enjoyed watching shows about medical mysteries and felt so inspired by hearing people talk about their disease and how they overcame their illness.

My mom and I would often watch medical shows together and I always told her I should contact them and see if they would be interested in hearing my story. Having watched all the shows, I knew I had not seen a segment featuring Wegener’s and thought what an excellent opportunity it would be to bring awareness to my disease and vasculitis in general.

In the fall of 2006 I sent an email to the Discovery channel. I told them what illness I had and asked if they would be interested in hearing my story. I soon received a reply stating they were not casting at the present time, but asked me to check their website for future opportunities. About 3 weeks later, someone from True Entertainment contacted me. They are the production company who does “Mystery Diagnosis” for the Discovery Health channel. I was asked some general information and then corresponded via phone calls and emails. I later submitted a time line of events that led up to my diagnosis of WG and what my life was like now. My topic was presented and I found out shortly thereafter that I had been cast! I was so excited and a little nervous all at the same time.

Before I knew it a date for taping the show here in Dallas had been set for the end of November in 2006. I worked with the best crew: Monica, Ann and Andy. We shot for 3 days. I had no idea how much work went into making the show. We taped interviews at a studio in Dallas, shot scenes at my home, work and doctors’ offices. We were even able to tape at Presbyterian Hospital in Plano. They were extremely generous and let us use an actual operating room for recreating the lung surgery I had there.

One thing I had not realized is how this experience would make me relive the process of being diagnosed. It was like hearing everything for the first time again. My pulmonologist, Dr. Blackmon, was an integral part of the show. I feel so blessed and fortunate that he was the doctor called in to treat me that evening I went to the ER when the mass in my lung was discovered. He has been so gracious and supportive of my family and me every step of the way. Having him in my corner has made my survival possible.

My hope and goal in doing this show was that I could make someone feel the same inspiration I felt when I heard others tell their story on Mystery Diagnosis. I know the day after the show premiered on April 16th, two women contacted Dr. Blackmon’s office saying they had seen the show and experienced many of the same symptoms and wanted to be seen. Friends and family who knew I was sick told me they had no idea of the severity of the illness. Everyone told me they thought the show was extremely informative and very well done.

It was truly an honor for me to tell my story and help bring awareness to Wegener’s granulomatosis and vasculitis.

To read more stories, please visit the Vasculitis Stories landing page.