Today we’d like to introduce you to Bianca Hernandez.
Bianca, please share your story with us. How did you get to where you are today?
Absolutely! I was diagnosed with Ulcerative Colitis on August 6th, 2015. I would say this day was the “start” of my story. For those unfamiliar with IBD, IBD is characterized as a chronic lifelong illness that causes inflammation within the lining of the organs in the digestive system. Two of the most common diseases that fall under the IBD umbrella are Ulcerative Colitis (UC) and Crohns’ Disease.
Four years ago, I was clueless about this disease. Four years later, IBD and patient advocacy have both become my passion.
Great, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
Definitely not a smooth road – but I wouldn’t have had it any other way. These past four years have been all about learning, growing, and being brave. As cheesy as it sounds, this burden in my life has been a tremendous blessing. For young women (and men) who are newly diagnosed, my one piece of advice would be to “own it.” It sounds very simple, but for many patients… this disease is NOT fun to talk about. However, if I’ve learned one thing over these past four years, it’s that I cannot dismiss something that is a big part of my life. Rather, I’ve chosen to embrace this disease by learning about it and sharing my story with others. In doing so, I’ve had honest conversations with my doctors, individuals in the IBD community, and patients I meet every day. By having the confidence to speak about my disease openly, I feel that it has helped me navigate through the ups and downs of this disease and encouraged others to do so as well.
As for young men and women who are just getting started to advocate in a field that they are passionate about, I would ask, “What drives you?” When I was first diagnosed, I wanted to learn everything there was to know about my disease. A fellow patient shared this with me – You are in the driver’s seat and get to chose how to navigate your future or you can take your foot off the gas, and give up. Giving up is never an option. So, onward and upward I go. I am able to do this because of my passion for learning, sharing and advocating about IBD. What excites you, what fuels you or what sets your heart on fire? Claim it, own it and proudly navigate your journey.
Please tell us more about what you do, what you are currently focused on and most proud of.
I was diagnosed with UC the summer before beginning my junior year of highschool. High school served as a time where I was testing the waters, choosing who I spoke to about my disease, and understanding the way UC was affecting me personally. I was losing weight by the day, drinking bone broth three times a day to heal my gut, and using the restroom 12-15 times a day. Attending school became a challenge, especially when it came to using the restroom during school hours. I remember one afternoon calling my mom sharing my frustration about what had occurred that afternoon-I had spent the majority of the day in the restroom stall. My mom and I spoke to the dean at my school and shared with her my diagnosis and the way this disease was affecting my life. Understanding my frustration, she offered me the option of using the private restroom on campus, and with it, a place to keep an extra change of clothes underneath the sink and the privacy I needed to deal with my disease.
After vocalizing my experience with those in my IBD community, I began to learn that other patients shared the same frustration (having restroom accidents, not having privacy in their restrooms, etc.). They asked me what they had to tell their administrators to spark this change at their own schools. This sparked the GO Free Program.
My junior and senior year of highschool was dedicated to meeting with school administrators in the Miami Dade area to implement the GO Free Program. Our initiative was to spread awareness and compassion about Inflammatory Bowel Diseases in school communities. I had the privilege of meeting with 15 school administrators as well as mental health and counseling institutions in the Miami Dade area.
Advocating became my passion, as I continued to work with my local Crohns and Colitis Foundation Chapter in Miami, helping organize Take Steps: Miami, a local walk dedicated to fundraising to improve the quality of life for patients with IBD.
After I graduated high school, I knew that I wanted to continue advocating. During the summer, I attended an Education Symposium event where a Foundation staff member spoke to me about the National Council of College Leaders. This was a group of college students diagnosed with IBD who worked to increase awareness of Crohn’s disease and ulcerative colitis through youth-focused advocacy and fundraising. The idea of being part of this group was exhilarating. I got home, researched, looked for the application, and got to typing. I applied later in September and anxiously awaited my acceptance.
Fast forward… the Monday after Thanksgiving, I got really sick and spent a week in the hospital. That Friday afternoon, I received a call from the current co-chairs at the time that I was accepted into the council. It was a moment I will never forget – you have to endure a little bit of pain for a big moment of joy.
Today, I have had the opportunity to serve on the Council for the past two years. As a member, I’ve gotten the opportunity to advocate on the Hill for patients rights, speak in Orlando about my patient journey, and this past year, I had the honor of moderating a patient panel as the Advocacy Chair at this year’s Day on the Hill.
I’m really proud to be apart of the IBD community. The individuals I have met through the Crohns and Colitis Foundation have inspired me and remind me of what it means to be brave. Their testimonies, experiences, and attitudes remind me that despite all that this disease can take away from your life, there is a lot of good that it can bring. I think the biggest thing that sets the Foundation apart is their dedication to helping patients and doing everything in their power to help improve the quality of life for millions of IBD patients. I also think that the events they host all across the nation, changes lives. I’ve met countless individuals who have attended Camp Oasis, Team Challenge, Take Steps, and many other events who all say that they leave encouraged to speak up about their disease and met others who feel as if their patient story is powerless.
What do you feel are the biggest barriers today to female leadership, in your industry or generally?
I think the biggest barriers today in the IBD community are the lack of individuals who are unaware of what the disease is. The reason I feel so strongly about advocacy is that this illness affects over 1.5 million Americans. Each day, patients who are dealing with personal health issues are also advocating for themselves over basic patient rights. I feel that as a society we should be aware of the illnesses that our brothers and sisters all struggle with. Therefore, I would like to encourage anyone reading this, to ask questions and take it upon yourself to learn. Today, we have so many resources at our fingertips, and the ability to help so many people, “Go Free.”
Contact Info:
- Phone: 3058466118
- Email: gofreeprogram@gmail.com
- Instagram: biancaisabellahernandez
- Facebook: biancaibd
Image Credit:
Photo of NCCL: Crohns and Colitis Foundation
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