Posted by Bianca Hernandez on March 08, 2018
Hi there! My name is Bianca. I’m and 18-year-old college student who loves Broadway and being a patient advocate with the PAC, my Crohn's & Colitis Foundation chapter, and the National Council of Crohn’s and Colitis Leaders. I was diagnosed at 15 with ulcerative colitis and since then have absolutely fallen in love with spreading awareness about Crohn’s disease and ulcerative colitis and fostering compassion around these chronic illnesses.
One of the greatest struggles I have faced during my IBD journey has been my lack of control of how this disease affects my body. For instance, most days I have a hard time controlling joint pain and extreme exhaustion. It can feel incredibly frustrating when I really try my best to prevent or manage these kinds of symptoms, but they still happen. It feels like the disease is in control, not me.
A year after my diagnosis, after enduring constant flare ups and dietary changes, I started to regain my normality of life. It was around that time, that I started meeting members of the IBD community and felt as if I was not alone. Inspired by others’ stories, I felt like IBD patients needed not only resources to help them, but also to feel connected & supported.
In April 2016, I created a program called GO Free, to promote the importance of private restroom access for IBD patients, while spreading awareness of and compassion for Crohn’s and Colitis. With the help of my friends, family, and people I have met through the success of GO Free, I am constantly reminded that I am surrounded by an incredible community of IBD fighters. I have made it a priority to focus on doing positive things in my life, while always embracing what makes me incredibly unique. I am learning that rather than dismissing my illness, to push past the pain and frustration, I need to “own it!” By shifting my perspective to see my IBD not as a burden, but as a blessing in disguise, I feel that my overall wellbeing has benefited.
I was introduced to the PAC after a hospitalization. A child life specialist mentioned it to me. A few days later, a dear friend connected me to the ICN Instagram page and I knew it was a sign. After looking into it, I was drawn to the PAC’s mission and goal to be a team that welcomes IBD patients with open arms. Immediately, I knew this was something I was called to be a part of. I am excited to be able to assist newly diagnosed patients, as I know first-hand how the process of being diagnosed can be scary and overwhelming for patients. It’s very calming to know that you have people there to support you and be a beacon of knowledge. I am excited to bring some advocacy ideas to the PAC and hope that I can inspire even more new patients to speak up about having Crohn’s and Colitis.
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