This post is the fifth and final in a series that introduced you to our five new grantee teams.
By Nikolai Kirienko, University of California, Berkeley, Crohnology.MD Project Director.How do you communicate the impact of a chronic illness when you look much healthier than you feel? This question has dominated my life from the time I was 12.
It started before the summer of 7th grade, when I came down with the flu along with most of my class. But when school began the next fall, I was still sick. In fact, I remained ill during the fall semesters of 8th through 11th grade. And no one, including my doctors or myself knew exactly why.
Managing Crohn's Disease
Then on December 28, 1998, during my senior year of high school, I was airlifted out of Bear Valley, CA with a full bowel obstruction. Six years of chronic inflammation from an undiagnosed case of Crohn’s disease had finally scarred my small intestine almost entirely shut. Yet, it was all very quick and unexpected as the helicopter lifted me off the mountain, leaving my family and my new snowboard behind in the middle of what had been a great powder day.
What my family, my doctors and I all missed were the subtle, progressive signs of steadily worsening Crohn's disease. The destructive patterns of this illness can unfold slowly over years, often without surfacing in a single definitive blood test or the most advanced medical diagnostic image.
For 600,000 American's with Crohn's disease, many of whom are young and leading active lives, accurate communication around these subtle, every day patterns can be a vital first step towards accessing appropriate care in a timely way.
Crohnology.MD
Over the last 10 years, I've had five more surgeries, spent over 300 days in the hospital and learned to keep a detailed electronic record of my symptoms. However, with 5,000 pages of text spanning four solid years of daily observation, I encountered an entirely new problem. How do I make sense of all this data? Especially when I have just 15 minutes to summarize weeks, months and years of experience with my provider in clinic!
Evolving from those early efforts, Crohnology.MD has emerged with the goal of making it easier for every patient with Crohn's disease to accurately select, record and share the most important health patterns from their everyday lives. By deploying connected technologies that can blend into a daily routine, such as smart phones and wireless weight scales, we hope to give patients and those who care for them more timely and actionable insight into the relationships between weight fluctuations, chronic pain, fatigue, sleepless nights, stress and of course, all those fun gastrointestinal symptoms.
The Crohnology.MD Team
Crohnology.MD is a collaborative research effort between the University of California, Berkeley, the Healthy Communities Foundation and the University of California, San Francisco. At the UC Berkeley School of Public Health, Principle Investigators Deryk Van Brunt Dr.P.H. and Linda Neuhauser Dr.PH. are guiding our team with decades of experience and research in the collaborative development and evaluation of online consumer health interventions. At UCSF, Principle Investigator Jonathan Terdiman, M.D., Director of the Crohn's and Colitis Center, and Elena Rodriguez, R.N. M.S. C-NP are working to ensure that Crohnology.MD fits well into a clinical workflow, while also improving the patient-provider relationship. Leading Crohnology.MD’s implementation and development is pioneering Continua Alliance member and systems integrator Praduman Jain and his staff at Vignet, with Paul Hamera providing design, and Marcos Athanasoulis, Dr.P.H. providing technical direction on behalf of The Healthy Communities Foundation.
We hope you'll visit our webpage for Crohnology.MD updates and follow our progress through the blog!
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