It seems like just yesterday the Spring Learning Session was around the corner! We're just FOURTEEN DAYS away from the 2014 Fall Learning Session - can you believe it!? As usual, the Patient Advisory Council (PAC) is excited, thankful, and busy preparing for the opportunity to contribute to the LS. Once again, the PAC Leadership is gearing up for busy and productive collaborations and presentations, and this time, we get to personally introduce two new PAC Scholars - Isabelle Linguiti and Bianca Siedlaczek!

14 days to go, 3 incredible days in Chicago, 2 amazing new PAC Scholars, and 1 fantastic session. Are you not excited yet!?

PAC representatives showing off their gutsy spirit at the Spring 2014 Learning Session!

Just in case you aren't bursting with gutsy energy yet, we wanted to give you a preview of what to expect from our two new Scholars. These young ladies are intelligent, creative, passionate, and spunky. We asked them to tell us (and YOU!) a little bit about themselves and their ideas:

Isabelle, 19, Philadelphia

"I’ve been frustrated with communication between patients and doctors because I feel like they can often turn stressful when we already have enough to deal with. Rather than sitting there with my frustrations, I feel like ImproveCareNow gives me the ability to do something to change that."

Favorite Candy: Dark Chocolate

If I could travel anywhere, I would go to....Iceland! That was my one wish, and I got to go!

In my free time, I like to....get creative and do art projects!

My role model is....my boss at CHOP. She herself has dealt with a lot with her health and is very successful. She wanted to help me succeed and has guided me every step of the way. She is very nice, and giving with her talent and time.

My ideas? "My vision for the Communications Task Force is to use it to create a program that allows patients to have a direct role in educating doctors on helpful listening and communication strategies when working with patients."

PAC members working hard at the Fall 2012 Learning Session (Back when we only needed half a table!)

Bianca, 15, Michigan

"I love that ImproveCareNow is more than just a collaborative effort between doctors and nurses; it involves patients, too!"

Favorite Candy: Sour Patch Kids

If I could travel anywhere, I would go to....Italy!

In my free time, I like to....take my dog on walks.

My role model is....my maternal grandpa. He is incredibly strong. He survived World War II before relocating from Italy to the United States and making a living for his family.

My Ideas? "Nurses have a lot of helpful knowledge and experience that would be helpful to PAC. Becoming more collaborative with the nurses of ICN can give the Advocacy taskforce another perspective for projects."

In 1999, at my 2-month check-up my family learned I have Turner Syndrome. Before my 6^th birthday I had ear tubes put in; tonsils and adenoids taken out; a tethered spinal cord released; my bladder and kidney tubes reconstructed, and was on daily growth hormone injections. I was regularly followed by an Endocrinologist, Urologist, Nephrologist, Allergist, Cardiologist, and the “team captain” my Pediatrician. Despite all of this, I didn’t look sick. People thought I was vibrant, brilliant, and basically a healthy, cute little Muppet.

I was diagnosed with ulcerative colitis (UC) at the age of 5. Or at least that’s when my doctors were finally able to figure out what had been going on for years. As a 5 year old I learned, in simple terms, that my body was “overreacting and attacking itself.

When I was first diagnosed with Crohn’s at age 15, I had absolutely no idea what that meant. For the first three months after my diagnosis I thought the medicine I was taking would just make it go away. I can still remember the day I asked how much longer I would have to take the medicine. My doctor looked surprised and then told me most likely for the rest of my life. After that I still lived in ignorance, thinking that taking the medicine forever would keep me totally healthy. It took months of intense illness to rid me of that notion. That’s when I fell into a deep depression. Everything seemed out of control and scary, and all I knew was that the rest of my life was going to be filled with this pain.

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 can, very clearly, recall the moment I realized I was a patient. There had been hints, of course: my Crohn’s diagnosis, lining up pill bottles on the counter, and my parents memorizing the GI nurse’s number. But I had obstinately protested, believing – if nothing else – that I wasn’t sick, I couldn’t possibly have a chronic illness, this was all just temporary. But after a few weeks, when the fall started to freeze into winter, the stark realization that the illness wasn’t going anywhere began to settle in. And then, during an appointment, my GI gently nudged a piece of paper towards me with the name and email address of “another girl like me,” meaning another pediatric patient. Finally it hit me square between the eyes – I had a chronic illness, I was going to be a patient forever, there were others “like me.”

It 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 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.

I had the pleasure of picking up a friend at the airport a few months ago. She had flown in, carefree and light on luggage (literally one 5 X 7 envelope contained everything she brought, including her bedding), to spend some time with me, my curious wife, and my even-more-curious daughters. She had also come to root around in my office and make new friends at the hospital where I work – OU Children’s. I loved showing her my cool office, the gizmos we have to help our patients learn and have a good time, and the terrific staff and providers that see our patients on a regular basis.

I was amazed to see, when I picked her up, that she was wide-eyed and ready to go. She had her arms up, food and drink in hand, and was ready for anything! Her spirit was catching; my daughters were immediately enthralled and showed her around our house, where she stayed at night, after going with me to the hospital each day.

One of the biggest challenges for a patient and their family is dealing with insurance companies. While insurance companies help families pay for medical care, sometimes it feels like they deny coverage of medications and other treatments for purely financial reasons. A patient is not a number on a page, they are a person with a personality and feelings. Patients with IBD and patients with any other chronic disease suffer. They try to live a normal life while dealing with symptoms; and with the right treatment, they find something that hints at normalcy. When an insurance company denies coverage, patients face the stress of no longer having a treatment that makes them feel better. And the unnecessary stress could cause their disease to get worse.

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: