About samisophia

I'm Sami Kennedy. I was a 2012-13 Scholar for the Patient Advisory Council (PAC) for ImproveCareNow, and now co-chair the PAC. I was diagnosed with Ulcerative Colitis at 14. I'm a senior undergrad studying biochemistry with dreams of becoming a pediatric sub-specialist physician (maybe a peds gastroenterologist!). I'd love to hear from you!

The Moment, Continued

I’ve spent two weeks now at Cincinnati Children’s Hospital, partnering with ImproveCareNow colleagues here in developing opportunities for patient engagement. Yesterday, fellow PAC member Alex invited me to be present at an orientation for newly diagnosed IBD patients and their families. As I sat at the “staff” table, I was hit by a quiet wave of shock. It’s been over six years since my diagnosis. Over six years. One moment, I looked at a girl of about fourteen in the audience and saw my younger self in her. At the same time, I know I’ve changed in meaningful and (then) unimaginable ways since my diagnosis.

I had the unique chance to imagine myself as a new patient all over again and reflect on the ways in which I have developed. I have been a patient since April 22, 2008. Sometime between then and now I became a patient advocate, like all of my colleagues on the PAC. The transition is not at all necessary to live a successful life with IBD, not always anticipated, and can happen at different times for different people. I’ve rarely stopped to reflect on how, when, and why I transitioned into an advocacy role.

I’ve written before about patient advocacy, but to follow-up on Jennie’s recent reflections on her transition from patient to patient advocate, I’d like to share what the PAC has put together describing some of the differences between a patient and a patient advocate. We did our best to collect a diverse range of opinions, but we would love to hear your thoughts, too! We’ll be reading and responding to comments, so please take a moment to share your perspective. What do you think?

PAC_Patient Advocates and Patients (revised)

Hello Andrew

Andrew Kornfeld surfing at ocean beach in San FranciscoIt was the spring of 2007, and I was finishing up my junior year of high school. It had been the hardest year of my life with classes becoming increasingly more difficult and a mysterious illness plaguing my body.  With daily diarrhea, debilitating stomach cramping, anemia, and other severe problems (which I will spare you from) it became clear that something was seriously wrong –– it was more than just the gluten sensitivity and irritable bowel syndrome I was previously diagnosed with.  My illness was at a tipping point and my quality of life had decreased dramatically.

I was finally given a colonoscopy and subsequently my mystery was solved: I had moderate to severe Crohn’s colitis.  While I remember feeling relieved to finally have a diagnosis, I was also extremely disappointed that it had taken nearly a year. How much needless suffering had I endured?  Soon after my diagnosis and one failed surgery later, I made the transition to the UCSF pediatric IBD clinic with Dr. Mel Heyman. This may have been the most important decision of my life. Dr. Heyman, along with Laura, the nurse practitioner and a team of other medical professionals, identified the right medications for me, referred me to an exemplary surgeon at UCSF and ordered additional tests. Over the following months, the substantial decrease in my symptoms was nothing short of miraculous. To me it felt like being released from a confining and painful space, into one that was warm and safe.

Over the years, I have felt truly empowered by the team at UCSF to take an active role in the treatment of my illness. Some of the modifications I’ve introduced into my care plan have involved: a gluten and dairy free diet, the intake of potent probiotics, and getting plenty of exercise. I am an avid surfer, and feel really energized by the rough waves at Ocean Beach here in San Francisco. I have also recently become interested in how psychological stress may negatively impact patients with IBD, and would like to investigate this further. I am grateful beyond words to have had Dr. Heyman as my pediatrician and to be currently volunteering my time as part of the UCSF IBD team.

Andrew Kornfeld Andrew graduated from the University of California, Santa Cruz with majors in Neuroscience and Psychology. He is currently volunteering with the UCSF IBD clinic, and plans to attend medical school starting in the fall of 2015.

Before I Was Diagnosed

On behalf of the Patient Advisory Council, we would like to introduce you to Josh. Josh is going to be sharing some comics/animation as his schedule allows, and we are very excited that he has forwarded us his first comic (and a link to an amazing video he created). Enjoy!

Sami + Jennie

Hi! I’m Josh Weisbrod, an animator and comic artist. Currently I’m an MFA candidate in USC’s animation program.

Last year I made an animated film about my diagnosis with Crohn’s disease (available to view at https://vimeo.com/81004804). But there were an arduous several years leading up to my colonoscopy in Medical Adventure Power!! Here is the story of the horrible Hamburger Helper meals and frequent trips to the bathroom that led me to the first of my (now 7) colonoscopies:

Josh Weisbrod is an animator and comic artist. This is his comic illustrating the time before he was diagnosed with Crohn's disease.