Posted by Sarah Nocito on December 08, 2016
Let's give a warm welcome to - and get to know - five new members of the Patient Advisory Council (PAC). Nicki, Rebecca, Becky, Sarah and Abigail are imPACting 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 are also using their voices and experiences to actively represent over 27,000 patients with IBD across the ImproveCareNow Network and are committed to collaborating and continuously improving outcomes. Let's meet them.
I’m Nicki Redmond and I am currently a sophomore at the University of Cincinnati. My immediate and extended family are all from Cincinnati so I am a proud born and raised Cincinnatian! I am majoring in Speech and Language Pathology and hope to someday work with individuals with autism. For the past two years I have worked at a summer camp for kids and young adults with disabilities so that’s why I am so interested in working with this population. I also love to run and read for fun! In regards to IBD, I was originally diagnosed with Indeterminate Colitis when I was in the 7th grade and then was officially diagnosed with Crohn’s Disease as a sophomore in high school. The years following my diagnosis were rough for me because I was testing out a lot of medications and was off and on steroids to try and see what would work best for me. However, I am now in remission and feeling good! I gradually became more and more involved with IBD advocacy after I began to feel better. I have participated in the CCFA Take Steps walk and Cincinnati Children’s Hospital mentorship program. I am glad to be a part of ICN and specifically ICN PAC because I think it is so important for those with IBD to understand that they are not alone and are able to seek help! I hope to advocate for those with IBD and inform others about it by being a part of ICN PAC.
Hi, my names Rebecca Schinkel, I'm 19 and I live in Ontario Canada. I enjoy reading, painting and hanging out with my family. I am a volunteer at my local hospital in the pediatric ward, which I absolutely love doing! I was diagnosed with Crohn's Disease when I was 8 and later diagnosed with vasculitis and arthritis. My health has definitely been a roller coaster ride. A few years ago my bowel was blocked and actually perforated my appendix, I had a bowel resection later that day. A while later I needed emergency surgery because scar tissue was strangling my bowel. From then on I was constantly in the hospital with infections. But now my health is sort of stable. I joined PAC because I want to share my experiences in hopes of helping other youth. I also wanted to be a part of projects that could really help others. It's great to be able to talk to other people with IBD and support each other.
Hi! I’m Becky Woolf, and I’m fourteen years old. I go to Oakton High School in Fairfax, Virginia. I’m involved with my school’s Improv Team and the Drama Department. I also love reading and writing. I’ve been underweight ever since I was born, and have had stomach problems for about as long. There’s even a chance that I’ve had Crohn’s all my life, but my symptoms didn’t pick up too much until I was five or so. I went through a series of specialists and tests until I was diagnosed with severe Crohn’s disease at the age of seven. Around that time, I was very, very sick. I was so underweight that I had very little body fat and got cold constantly. I would come home from school in a hat, scarf, winter coat, and gloves and curl up and sleep. I had no energy, so while my sister played soccer, I slept in my room or read a book. No medicines would put me in remission for very long, so, when I was nine, my gastroenterologist sent me to CHOP (Children’s Hospital of Philadelphia) to start an NG Tube. I did this for three years, and it did wonders for me. I gained weight, got energy, and joined my sister’s soccer team. It even got me into remission for a month or two. I haven’t been in remission since, but I’ve been with my gastroenterologist ever since my diagnosis, so we’re pretty close. A few months ago, he told me about PAC. He said I might be younger than the others, but he thought I was mature enough to participate. He knew I wanted to help others with my disease, raise awareness, and make a difference. My dad got a call asking me to attend the ImproveCareNow Conference with the PAC in Chicago in September 2016. I was so excited- a new chapter of my life began, one where my voice and story are helping others, all thanks to PAC. Being part of PAC lets me make a difference that I couldn’t make anywhere else.
My name is Sarah Bivona. I am from Duluth, Minnesota, where I work doing data entry for my hospital’s trauma program. I am also a huge aviation geek, and my dream job would be to be a professional pilot – if only I could pass the medical exam. I was diagnosed with Crohn’s disease in April 2013, during my sophomore year of nursing school. About six months later, I changed majors to health information management, and graduated with my bachelor’s degree in May 2016. While my disease was initially mild, it has proven challenging to get and keep in remission. Because my inflammation is relatively mild and because my lab work is always normal, even in a flare, I have had doctors and other providers be dismissive to me and even suggest that my symptoms were “all in [my] head.” I switched hospitals two years ago, and at that time, I was put on Cimzia and methotrexate, which got me into full remission for the first time since I was diagnosed. I joined the PAC because I feel it is so important for patients to have a voice in their care and to understand their illness and what they can do about it. In the short time I have been with PAC, I have found this group of people who “get it” to be one of the best things that has come out of my experience with IBD.
My name is Abigail Sandifer, and I am 20 years old. I am majoring in Nursing at Brenau Women’s College in Gainesville, Ga. I am very involved on campus through Greek Life as the Philanthropy Coordinator of Alpha Gamma Delta, the Student Government Association as the Vice President of the Sophomore Class, and the Servant Leadership program. I love being involved and “contributing to the world’s work in the community where I am placed”! There are so many ways that we can touch the lives of those around us, and I aspire to do so all throughout my life!
I was diagnosed with Crohn’s when I was 18 during the summer before my freshman year of college. While I am a new ‘Crohnie’ compared to many who are involved with the PAC, I am so glad that I found this wonderful group of young IBD’ers so early in my diagnosis because this experience has allowed me to quickly become, not only a self-advocate, but an advocate for all those who are part of the IBD community. I believe that being part of the Patient Advisory Council for ImproveCareNow allows me to have a hand in bettering the lives of those suffering from IBD and improving the future of IBD patients everywhere.
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