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 PAC is Ready for ICNLS! Are YOU?

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!?

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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.”

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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.”

Introducing Jessi! Read her story.

In 1999, at my 2-month check-up my family learned I have Turner Syndrome. Before my 6th 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 am the middle of three girls. My older sister had a prenatal stroke, resulting in right hemiplegia and seizures. My baby sister spent the first month of her life in the NICU but is very healthy now. All that is really just to say that my family has spent a lot of time in hospital waiting rooms.

During my 6th grade year, I missed a lot of school with complaints of pain and fatigue.  A normal check-up for my asthma ended with a “by the way, I’ve had a lot of stomach pain and some diarrhea…” This prompted a second look at my weight chart, which showed a drastic loss of 21 lbs. in less than 2 months. Blood tests showed I was severely anemic and Vitamin D deficient. And so, we added Dr. Moyer, my GI from NWPGI, to my list of specialists. A colonoscopy was ordered, then we waited to find out if my official diagnosis would be Crohn’s or ulcerative colitis (UC).

My family and I believe that the fact that I was on long term antibiotics for both kidney and ear infections may have contributed to the triggering of my UC. It’s also possible that my frequent doses of steroids to treat my asthma masked, or put off my UC symptoms. By my 13th birthday, I had gone from 113 lbs. to 72 lbs.; from a girl’s size 16 down to an 8/10! Several bad flares led to ER visits, hospital stays, IV’s, several rounds of steroids, and recommendations for Remicade.  For me, with compromised kidneys, and a bicuspid heart valve, (my only real health threats from Turner’s) biologic drugs like Remicade are quite scary and will only be a last resort.

Because of my health, my family and I decided on home schooling for 7th grade. My mom and I decided to try the Specific Carbohydrate Diet (SCD) in hopes of staying away from Remicade or other heavy drugs. I thrived doing online school, eating a SCD diet, and we began doing individual food challenge tests to identify foods I really have to avoid. We were able to slowly add back some ground corn, like gluten free corn chips, rice occasionally, and sweet potatoes (my favorite!) into my diet. My health leveled out with these adaptations and we believe the carbs helped metabolize my meds and make them work better. I feel so much better on a gluten and dairy free diet, and feel bad very quickly if I eat “wrong”. Even Portland’s famous Voodoo donuts are no longer tempting because I know what will happen if I eat one. I take my prescribed Azathioprine, Delsacol, and Allopurinol along with VSL-3 Probiotics, Iron, Vitamin D, Fish Oil, and Calcium, and have staved off the need for Remicade so far.

One year later, and I was back in full time public middle school. I was in my second play, walked a 5K, only missed 2 days of 8th grade due to UC, and graduated from middle school with the highest honors.

Jessi Erickson shares her story about living with Turner Syndrome and ulcerative colitisNow, I will be a sophomore in high school this fall. I pack my modified Paleo lunch to school every day and have a 504 medical plan that gives me clearance to leave class and access to the nearest restrooms whenever I need to go.

I am sensitive to stress, still on hormone therapy for Turner’s, and turn into a mean little hulk when weaning off of Prednisone. I have been able to avoid steroids for a long time now by carefully watching what I eat and not missing any meds.

In my spare time I write, read, sing, and practice archery, (Twitter, Tumbler, Pinterest, and Facebook too!) I want to be a writer and travel. My first stop will be Ireland! I have a big imagination, an even bigger heart (not in the enlarged, real medical sense) and am willing to help anyone I can, especially other kids who are dealing with IBD.  I want to help raise awareness that Turner’s girls have higher chances of having IBD. This is still news to many endocrinologists who diagnose Turner syndrome.

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)