Behçet’s: 10 years to Diagnosis

The story of Lauren

I am a 28 year old nurse living with Behcet’s Disease. I first had severe mouth ulcers at the age of 16 which recurred regularly. I repeatedly sought care because my mouth would become covered with sores and the pain kept me from eating or drinking. I was told for years that it was a food allergy, “idiopathic stomatitis”, or I was just treated for the symptoms. Eventually, I began to have serious redness and swelling in my knees with crepitus and pain. I always had acne because I was a teenager, or so I thought. It wasn’t until those symptoms were joined by genital ulcerations, eye inflammation, and color changes in my fingers and toes that I put together the pattern.

I continued to research my illness because physicians didn’t have time to look for answers, just treat symptoms. I will never forget the feeling I had when I stumbled on an article about Behçet’s disease. I couldn’t stop reading about the disease and when I read a story from someone else with Behçet’s I knew that’s what I had. Everything they said was just like my story, and unfortunately most of us wait months or years before we can put our symptoms together as one disease and then find a physician who can diagnose it. I told my GP what I found and waited another 6 months to get in to my rheumatologist. I was 26 when I was finally diagnosed with Behçet’s.
The single most important step in my journey was establishing a relationship with a rheumatologist; my life is better because of him! My hope is that someone who is searching for answers like I was can hear the stories of others and find a diagnosis sooner. Awareness really changes lives!

Meet other people living with Behcet’s disease who understand –