Posted by Natalie Beck on March 16, 2017
Let's give a warm welcome to - and get to know - six new members of the Patient Advisory Council (PAC). Grady, Nick, Natalie, Shawntel, Emily and Laci are ready to #imPACt the lives of kids with Crohn's disease and ulcerative colitis, by raising awareness about the realities of life with Inflammatory Bowel Disease (IBD) and building connections and tools to support each other and all young patients with IBD. They're also using their voices and experiences to actively represent over 27,400 patients with IBD across the ImproveCareNow Network and are committed to collaborating and continuously improving outcomes as part of our Learning Health System. Let's meet them.
My name is Grady Stewart. The year is 2015. My freshman year of college at Louisiana State University started out like the beginning of an indie coming-of-age film. I was exploring independence, searching for the meaning of life, and finding myself in between long nights of partying and three-hour lectures. I had moved about an hour and a half up the road from New Orleans where I had lived for all my life. Growing up in the city exposed me to a lot of unusual experiences and people, which I credit with shaping my personality. I do speak French, but sadly, I don’t know how to wrestle alligators.
Nonetheless, I have some pretty interesting hobbies. I am an avid circus artist and you’ll often find me riding a unicycle or juggling. As a child, I dreamed of being a filmmaker so when I got to college I decided to major in Mass Communication. One morning after a football game, I got sick. At first I thought I ate something that didn’t agree with me, but I never got better. After deciding that it wasn’t the world’s worst case of food poisoning, and with encouragement from my roommate, I finally went to the doctor. Well, actually, several doctors. After bouncing around for a bit, I was diagnosed with ulcerative colitis at 18.
Immediately, it felt like my world came crashing down. I had no idea what my diagnosis meant or how it would change my life. It felt like I had lost myself. Later on, I realize that it was to be one of my hardest battles with adversity since Hurricane Katrina. After months of fighting day in and day out, something clicked in my mind. I realized that I had the power to make a difference, and that I could be more than my disease. I discovered that I didn’t have to let the disease dominate my life. I organized a group of fellow circus artists and lead them in my first Take Steps walk where I raised about $1400. I started volunteering at the local animal shelter. This year, I became a member of the CCFA’s NCCL. I have learned that I am more than IBD and that I have the power to make the world a brighter place. IBD has shaped me into a stronger person, and I hope my involvement with the PAC will continue to enable me improve the lives of other warriors in the community. To the all the other boys and girls currently writing their own stories, please know that chronic illness is not the end of your story, but merely the beginning.
My name is Nick Szuch. I’m 19 years old and a sophomore at the University of Cincinnati. I’m studying biomedical engineering, in part because of my Crohn’s disease. Growing up I always liked math and science and wanted to be an engineer. When I was diagnosed at 13, I was exposed to the medical world and later decided that I wanted to work in it. Biomedical engineering is a perfect mix of these two things. On campus, I’m in the Alpha Tau Omega fraternity. I like to play different intramurals throughout the year with friends. I am the fundraising chair for the philanthropy committee. I also just started helping tutor kids in coding. For the most part my Crohn’s is fairly manageable as long as I’m good about sticking to my treatment schedule. I’m currently on Remicade and hope to be able to stay on it as long as possible, as I’m doing really well! I’m really excited to be a part of the PAC and meet everyone!
My name is Natalie Pearl Jordan, and I’m from Atlanta, GA. I am currently a sophomore in high school, and my hope is to attend Georgetown or American University in two years for International Service. My passion is serving others, and I am currently an active tutor for international students in my school and around the neighborhood. Just one month after my 16th birthday, I was diagnosed with ulcerative colitis. Prior to this, I had never heard of inflammatory bowel disease. My father is also an ulcerative colitis patient but before my diagnosis I had never taken the time to research this chronic disease. Leading up to my diagnosis, I had many blood tests done, visited my pediatrician a couple times, and was finally sent to my gastroenterologist. After my first colonoscopy at the age of 16 (November 2016), my family and I were met with the unfortunate diagnosis of this chronic disease. As I write this, only three months later, I feel very grateful to be able to treat my ulcerative colitis with medication, which has been working well for me ever since my diagnosis (I have been in remission!)
The reason why I decided to take part in the Patient Advisory Council was to help IBD patients who feel the same way I did three months ago. Before learning about this community of young people in my same place, I felt alone, and like I was the only 16-year-old girl out there who had to take medication every day and deal with ulcerative colitis. Today, I am thrilled to be a part of PAC; to prove my IBD does not define me, but makes me a strong fighter!
My name is Shawntel Bethea; I am 24 years old. Although I suffered from symptoms of IBD years before I was diagnosed, I was still somewhat of your average kid. I loved computers and being a part of the tennis team.
I was diagnosed with ulcerative colitis during my senior year of high school and in that moment my world changed entirely. Like many being diagnosed at such a young age, I didn't understand. I had no idea what IBD was, what having a chronic condition really meant or the impact it would have on my life.
Since being diagnosed I have exhausted many treatment and therapy options, from pills to injections to infusions - you name it. This eventually led to the removal of my large intestines in 2014 (I lived with an ileostomy for six months) and the creation of my J-Pouch in 2015. The surgeries were extremely hard, mentally and physically. Adjusting to life with an ostomy, then a J-Pouch has taught me so much. One of the most important lessons has been how to truly love myself.
I love to share my journey and help others. I am a contributor to The Mighty and a few other sites where I share my stories of strength living with a chronic illness. I also have my own website (MoreSpoons.com). In the past I have raised money for CCFA in support of their efforts toward finding cures for Crohn’s and Colitis. I have worked with pharmaceutical companies to help give insight from a patient perspective and attended events to raise awareness.
Helping to raise awareness makes me feel empowered as a patient and person. I want people to know what it is like to suffer from IBD and why it's so important to support research and other efforts to find a cure. I look forward to working with the ICN community!
My name is Emily Jones, and I am sixteen years old. I am from Houston, Texas, and I was diagnosed with ulcerative colitis when I was nine years old at Texas Children’s Hospital. I have been under their care ever since. I spend my free time riding horses (hunter/jumper) and traveling around the country to compete in horse shows. I am able to do this because I have been in remission ever since I was twelve years old. The treatments that have really kept me well for all of these years include Remicade (infliximab) and good nutrition. I had a major problem with malnourishment before I went into remission, which caused me to need a nasogastric (NG) tube and a gastrostomy (G) tube. I joined the PAC because I want other patients with IBD to be in remission for as long as I have, and I believe that PAC’s initiative to improve patient experience and outcomes will help to achieve that. I also think that the PAC is a great way to connect with people who have had some of the same medical experiences and trials as I have.
My name is Laci Altman and I'm a junior at the University of Pittsburgh, majoring in biology. I was diagnosed with Crohn's disease when I was 18; just as I was starting college. Since then, I've had three surgeries and have gone through many medications in order to reach remission. My disease course hasn’t been the easiest. Less than two years after my first bowel resection, my bowel perforated requiring another resection. Following that surgery I had lengthy recovery and a yearlong battle with Clostridium difficle (C. Diff) - a highly contagious infection where bad bacteria outnumber the good in the colon, leading to colitis, bleeding and frequent, watery, foul-smelling stools.
Currently, I am involved in conducting research looking at the psychosocial effects of IBD, am heavily involved with my local CCFA chapter, and facilitate a social group for young adults with IBD. My goals in joining the PAC are to make an even bigger difference for my fellow IBDers and to help shed light on the importance of patient-centered medicine in my community. I believe that working with other IBD patients my age, through the PAC (the next generation of educators, health care professionals, etc.), will improve the experience of other patients and families dealing with IBD.
We invite everyone interested in getting kids with Crohn’s disease and ulcerative colitis better right now to join us!
Get involved with the PAC!