Julie Desch – Sick and Happy
My Journey of Sick & Happy
I have lived with cystic fibrosis for 58 years. Though I have two copies of F508del, I have managed to stay relatively well with my native lungs over the years through a combination of regular exercise, strict adherence to my treatment regimen, a proactive stress management attitude, and a large dose of luck.
When my health started to decline while working as a pathologist, I made the difficult decision to retire early. With unexpected time on my hands, I decided to learn as much as I could about my true passions, physical fitness, and positive psychology. I certified to be a personal trainer (ACE, NSCA) and then as a Wellness Coach (Wellcoaches, Inc.) with the intention of coaching adults and children with CF to become and stay as fit as possible, and to optimize happiness. To accomplish this, I founded a 501(c)(3), through which I provided wellness and fitness coaching for many years. In this role, I assisted researchers at Stanford Children’s Hospital and University of California San Francisco to develop fitness coaching in research protocols involving both adults and children with CF.
More recently, my focus has shifted to mental health techniques to assist with the stress of living with such an unpredictable, yet inexorably progressive, illness. I became trained to offer a Mindfulness-Based Stress Reduction courses, which I have taught several times in an online setting to eliminate the risk of cross-infection. I recently completed a two-year mindfulness meditation certification teacher training program with Jack Kornfield and Tara Brach, for which I have designed my own course, “Living Mindfully With Cystic Fibrosis.” I am currently offering this course online, as well as MBSR.
Finally, I have volunteered extensively with Cystic Fibrosis Research, Inc. (CFRI) over the years. There, I currently Chair the Research Advisory Committee and serve on the Board of Directors.