A Full-Circle Moment: Hannah’s Path from IBD Connect Member to Media Director

When you’re diagnosed with inflammatory bowel disease as a teenager, life can feel suddenly divided into before and after. Plans shift, milestones look different, and you’re forced to grow up faster than expected, often while searching for people who truly understand what you’re going through. At IBD Connect, we know how powerful it can be to find community in those moments, and how transformative it is when that support grows alongside you. For Hannah Marmor, IBD Connect became that community. Diagnosed with ulcerative colitis at just fourteen, Hannah navigated adolescence, academics, and chronic illness all at once, finding understanding and connection through IBD Connect’s programs. Years later, she now returns to the organization not only as a community member, but as its new Media Director bringing both lived experience and professional passion into her work. In this interview, Hannah reflects on her IBD journey, the impact IBD Connect had on her as a young person, and what it means to now help shape the stories, conversations, and connections that support today’s pediatric and young adult IBD community as IBD Connect’s newest Media Director and Blog Writer.

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1. Can you share a bit about your IBD journey and how being diagnosed with IBD has shaped who you are today?

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My IBD journey began during the summer before I started high school. I started to experience left side abdominal pain and an increased urge to go to the bathroom. Sensing that something was not right, I told my parents that I was not feeling like myself. Together, we decided to take it one day at a time hoping that I would start to feel better.

        Several months later, during Christmas break, things took a turn for the worse. My family planned a trip to Florida to visit my grandparents – a trip I was especially excited about since I hadn’t seen them in months, and my cousins, who I am very close to, would be joining us.

        Mid-way through this trip, while relaxing by the pool with my cousins, the abdominal pain and urgency increased sharply. By late afternoon, my father, concerned, took me to the emergency room. That evening, instead of joining to watch the Bruins play the Florida Panthers and witnessing Hockey Hall of Famer Jaromír Jágr receive the “Golden Hockey Stick” from his teammates, I found myself in the emergency room watching this game on a small hospital TV in excruciating pain. This marked my first IBD flare, and ultimately resulted in my ulcerative colitis diagnosis the following month. 

       At 23, I’ve spent nine years living with ulcerative colitis. The condition often means dealing with pain and urgency that others can’t see or understand. This experience has made me more empathetic toward those with invisible struggles and taught me to prioritize my health, keeping up with treatments, eating well, and resting. Finding supportive communities through IBD Connect and at university has also helped me feel understood and less alone. These communities have inspired me to want to advocate and give back to others who also struggle with chronic illnesses. It is for this reason I am so excited to be the new Media Director and Blog Writer for IBD Connect. 

2. Growing up in a family where IBD was already present, how did that context shape your experience of your own diagnosis?

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From a young age, I was always aware that my dad struggled with stomach issues. My dad often experienced abdominal pain and, at times, he would spend a considerable amount of time in the bathroom. For this reason, when I received my IBD diagnosis, my family and I were not surprised. Looking back, I realize that my father always carried a quiet concern that his children might also develop IBD. Years later, in conversation with my dad, I discovered that he had lived with IBD symptoms for a long time before finally receiving his own diagnosis. He shared how important it was to him that I never had to struggle in silence the way he did.

  To be honest, having a father diagnosed with IBD has been invaluable. As soon as I began to show acute symptoms, my dad acted quickly. Within weeks, he arranged for me to see a pediatric gastrointestinal specialist making my path to an IBD diagnosis much smoother than it might have been. My dad has also served as an indispensable role model helping me manage and cope with my disease. Today, if the timing works out, we will schedule our infusion treatments together. 

3. How did you first discover IBD Connect, and what motivated you, or your family, to get involved with the community?

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When I was a junior in high school, I wanted to find a community of other individuals who were also diagnosed with IBD. I knew the Children’s Hospital in Boston had weekend events to support their IBD patients. However, my weekend schedule was quite busy because I played both club and varsity ice hockey. Since I could not participate in the Children’s Hospital programs, I looked at the Crohn’s and Colitis Foundation: New England Chapter’s website for a support group closer to my home in Central Massachusetts. I was lucky to find IBD Connect and immediately reached out to Lisa via email. She responded so quickly and the IBD Connect community was so welcoming! I was one of the older kids and I had just entered remission, still, I felt, for the first time, that I had found a community that understood my lived experience. 

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4. Looking back, what role did IBD Connect meetings and programs play in helping you feel supported or understood as a young person with IBD?

Before finding IBD Connect, even having a father who is an IBD patient, I felt somewhat isolated and alone. My friends did not share the same health challenges, and some of them were not aware that I was struggling with a chronic illness. Finding a community of people who truly understood the unique challenges I faced made all the difference. It helped me feel seen, supported, and far less alone.

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5. You’ve now experienced IBD Connect both as a participant and as a team member. How does that perspective influence the way you approach your new role?

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I would love to draw on my lived experience with IBD to connect with younger patients and their families grappling with this chronic condition. My goal is to use my creativity to bring in fresh ideas to our social media platforms and expand outreach for our monthly support group meetings and events, both in person and virtually. Ultimately, I hope to help foster a safe, supportive and engaging environment where everyone feels welcomed and empowered.

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6. In what ways do you hope to bring your academic and research experiences into your work as Media Director at IBD Connect?

During my time at university, I had the opportunity to work in a gastrointestinal research laboratory. Although much of the work was highly academic and theoretical, my work helped develop my interest in the latest advancements and innovative therapies aimed at improving the quality of life for IBD patients. I hope to draw on my academic and research background so that I might share with the IBD community new developments and innovative possibilities in IBD treatment. By staying informed about the latest treatment advancements, I aim to keep others updated on groundbreaking discoveries and potential new therapeutics.

7. As the new Media Director, what excites you most about overseeing IBD Connect’s website, social media, and overall media efforts?

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I look forward to expanding the outreach of IBD Connect to other patients and their families struggling with this chronic disease!

8. What kinds of stories or conversations do you hope to amplify through IBD Connect’s blog and online platforms?

I hope to share stories and conversations that will resonate with the IBD Connect community. My aim is for this content to be empowering, informative, and uplifting.

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9. What do you hope pediatric and young adult IBD patients feel when they engage with IBD Connect’s content and community?

When pediatric and young adult IBD patients engage with IBD Connect’s social media content and community, I hope they feel seen, understood, and supported. Living with a chronic illness like IBD can be isolating. It is my intention, that every young person who connects with our community, walks away feeling a sense of belonging and that they have found a place where their unique struggles are acknowledged and their voices are valued.

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10. As you step into this new role, what is your hope for the future of IBD Connect and the community it serves?

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I hope that IBD Connect continues to broaden its outreach and leaves a lasting, positive impact on every patient and family that chooses to engage with and ultimately becomes a part of this valuable and welcoming community.

Hannah’s journey is a powerful example of what IBD Connect strives to make possible. What began as a source of support during some of the most uncertain years of her life has come full circle, transforming into an opportunity to give back, lead, and uplift others who are still navigating those early stages of their IBD journey. IBD Connect’s mission is to support, engage, and empower pediatric IBD patients and their families, and Hannah now plays a direct role in bringing that mission to life. Through her work as Media Director, she helps ensure that patients and caregivers see stories that reflect their realities, resources that meet them where they are, and a community that reminds them they are never alone. By shaping the conversations shared across IBD Connect’s website, blog, and social platforms, Hannah is helping extend the same understanding, reassurance, and hope that once supported her. Her story is a reminder that when young patients are met with compassion and connection, they don’t just survive. Instead, they grow into advocates, leaders, and sources of strength for others. We are incredibly grateful to Hannah for sharing her journey and for using her voice and skills to support the next generation of pediatric IBD patients and families.

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At IBD Connect, this is why we do what we do: to walk alongside families through diagnosis and beyond, and to empower individuals like Hannah to transform lived experience into meaningful impact. Together, we continue building a community rooted in support, engagement, and empowerment- one story, one connection, and one full-circle moment at a time.

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Disclaimer: Please note that this blog post is for informational purposes only and should not be considered medical advice. For guidance specific to you or your child’s treatment plan, please consult your healthcare provider.

Note: If you’d like to share your own IBD journey, we’d love to hear from you! IBD Connect frequently connects with patients, caregivers, family members, friends, healthcare professionals, advocates, leaders, etc. for guest blog posts and interviews. Please feel free to reach out to Hannah Marmor, IBD Connect’s blog writer, via email at hannahmarmor@ibdconnectinc.org. Your story matters, and it has the power to inspire others.

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