Posted by Sarah Nocito on October 14, 2016
Let's give a warm welcome to - and get to know - six incredible new PAC members & patient advocates. Christian, Emma, Hindy, Julia, Natalie & Marisa 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 26,000 patients with IBD across the ImproveCareNow Network and are committed to collaborating and continuously improving outcomes. Let's meet them.
Hi, my name is Christian Lawson, I am 17 years old and I attend Atlanta Adventist Academy. I am very involved in my church, school, anything video production, student leadership positions, and more! I love staying active and always doing things to help and serve others.
At the age of eight, I was diagnosed with Crohn’s disease. It’s been an up and down hill battle, and I consider that it’s almost like riding a rollercoaster. In 2015, I faced a horrible flare up. I lost function of my joints and could not do anything for myself. While in the hospital, the test and procedure results came back showing I had six to 10 inches of my small intestines that were 80-90% closed. They told me that I would need to have surgery in order to remove the diseased part. I was so scared and had read all of the stats, which made me worry more. BUT, I had surgery and my recovery was quick! A couple of days after my surgery, I was even eating solid foods and doing laps in the hallway. Today, I am doing well! My weight is wonderful, my appetite is awesome, and my Crohn’s is in remission. I am currently on immunosuppressants and biologics.
A few months ago, I received a phone call from my care team, asking me if I would be interested in joining the ImproveCareNow Patient Advisory Council (PAC), and I gladly accepted. The reason I joined the PAC is because I want to share my story with other IBD patients within my center. I want to make an imPACt in my center, and all over the world. IBD is a tough disease to have, but with the help of doctors, nurses, and more you are able to make it through. I believe that peers can also help with the transition process for those who are newly diagnosed with IBD.
My name is Emma Lowe, and I am fifteen years old. I live in Ohio. My favorite things to do are practice photography, read, and write. I also enjoy traveling, and I love languages. I was diagnosed with Crohn's disease in June of 2016, and was put on Remicade. So far, the Remicade seems to be working, and I just finished up my loading doses. I am very excited to be joining the PAC so I can share my experience with others, and try to help those who are going through what I have been through. I have tried not to let Crohn's affect my daily life, and I hope to be able to provide guidance to other patients. I joined the PAC because I was eager to meet more people who have IBD, and learn about their experiences. So far, I have met some great people, and I have started working on some projects that I hope will help others. It's fantastic to be in an environment where I am able to talk with other people who know what I am going through.
My name is Hindy Klein. I'm 20 and from New York. I'm a photographic designer; I design albums, photo books, and collages. I also do Photoshop editing. My job is mostly a hobby for me as I love pictures; taking them, being in them, editing them and looking at them! I also love to travel, I like seeing different countries and their cultures. I was diagnosed with ulcerative colitis at age 16, and after being extremely sick for a few months I switched to The Children's Hospital at Montefiore where I was re-diagnosed with Crohn's disease. I feel that as a part of the ImproveCareNow Network, my doctors at Montefiore have managed to bring my disease under control in a way I would've never thought possible, given how sick I was. They have also given me the strength and perseverance to manage my symptoms in times when I don't feel my best. Since my diagnosis I have become very interested in learning more about IBD and to help others, therefore when I heard about the PAC I knew that this was something I would love to be a part of. I wish to educate others about IBD by sharing my experiences, as well as learning from others.
My name is Julia Matos and I attend the University of Nevada, Reno, but have had to take a year off due to medical issues. I enjoy the little things, such as spending time with my family and friends. I was 19 when I was diagnosed, but had been experiencing symptoms for years. It took me years to finally be diagnosed, which is a sad reality for some people with IBD. It changed my life forever. I spent 7+ weeks in the hospital and had two major surgeries. Being diagnosed with an autoimmune disease is terrifying, especially when you don’t know anyone who can relate. However, when I became a part of ImproveCareNow all that changed because I found a group of people who completely understand my situation! Writing an article for the PAC about tubes/TPN was something I really enjoyed because I felt as though I got to help others understand an aspect of IBD life. Becoming a part of this group definitely gave me a better attitude and outlook on my life!
My name is Natalie Beck, I am 22 years old and a senior at University of Cincinnati studying Biology of Animal Sciences. I was diagnosed at 17 with Crohn’s disease, which had most likely gone unrecognized for about five years prior to that. I was familiar with the disease because my father had it – but they took so long to diagnose me because my symptoms were not “typical.” One thing I have learned in ImproveCareNow is that they are big on ensuring patients, parents and clinicians know that the disease is NOT “one size fits all.” Everyone has different severity, different symptoms, different triggers and more. I had been slowly accepting my disease and started to reach out to IBD peers a couple of years ago. I researched everything possible about the disease, and became as knowledgeable as I could about IBD and what it can to do you mentally, physically, and more. These perspectives lead me to connect with ICN immediately.
Being a part of the PAC has made me feel so included and important in the IBD family. I joined the PAC, became Communications Chair, and threw myself into this amazing organization. Feeling like my opinion is cherished just as much as a clinician’s makes me feel so worthy and like I can make a real difference. I love sharing real-life IBD struggles and experiences on our PAC Twitter & Instagram accounts (@icnpatients). We have connected with hundreds of other clinicians, parents, and patients just because of social media, which is wonderful! I hope to continue to make an impact in ICN, and want to ensure ICN is collaborating with all hospitals. After all, why wouldn’t you want the best care possible for your IBD? It’s vital that patients and parents work equally with their physicians! I am so grateful for all I’ve learned and been involved with in ICN, and I can’t wait to see where it takes IBD in healthcare.
Hello, my name is Marisa Bocklet and I am currently attending James Madison University as a sophomore pursuing a dietetics major with a chemistry minor. I love long distance running and playing field hockey. I also like water sports (boating, paddle boarding, tubing, skiing and knee boarding). My interests include Nutrition and Wellness (Medicine). I was diagnosed with Crohn’s disease when I was seven years old at CHKD in Norfolk, Virginia. Until I was about 12 years old it was a constant daily battle to feel comfortable enough to leave the house and attend school. None of the medications that my doctor was trying seemed to be working. It was a very frustrating time for me and my family. Fortunately, about five years after my diagnosis I started Remicade and for the first time in years I felt well and had enough energy to keep up with the demands of my life. After about two and a half years on Remicade, I developed an anaphylactic reaction to it and was no longer able to take it. My doctor then started me on Humira, which has been working just as well ever since it was started about four years ago. My disease has definitely been hard to handle at times but it has also inspired me to pursue my dream of attending medical school in the future so I can give back and help others. I joined the PAC because it seemed like a great way to help others with IBD get the support and inspiration they need to live with their disease. Being diagnosed almost twelve years ago now, I am jealous of all the programs and information that newly diagnosed patients have. When I was diagnosed, we didn’t have programs like ImproveCareNow or even people that my family and I could talk to about it. It makes me so happy to see all the progress that has been made towards IBD awareness.