Lucie Laštíková
Inflammatory Bowel Disease
Czechia

Living with a chronic illness is never easy. It requires physical strength, mental resilience, and often an entirely new way of life. But it can also unlock unexpected strength, perspective, and purpose. In my case, it led me to a meaningful career at the intersection of patient advocacy, public health, medical research, and international cooperation.

My name is Lucie Laštíková. I am a patient with Ulcerative Colitis (UC), a published author, a clinical trial ambassador, and an active professional working with medical experts and institutions to improve the lives of patients across Europe and beyond. My diagnosis at age 12 changed everything. But over time, it became the foundation for a life that combines personal experience with professional purpose.

A Life Rewritten by Diagnosis

At 12, my life should have been about school, friendships, and early adventures. Instead, I was navigating daily pain, frequent hospitalizations, and the difficult emotional weight of a chronic illness. I had to give up hobbies, limit my social life, and reimagine my future. For years, I struggled not only physically but mentally, as I tried to understand what living with UC would mean for the rest of my life.

The turning point came during my university years. I realized I didn’t want to merely survive, I wanted to live fully. I sought out better treatment, changed doctors, and began reconnecting with the world I had retreated from. I also began volunteering with the Czech patient organisation called Pacienti IBD, which marked the start of my advocacy and leadership journey.

From Recovery to Discovery

Once I regained some stability, I made a decision: chronic illness would not limit my curiosity about the world. I’ve since visited over 30 countries, including challenging destinations like the North Pole, Chernobyl, and Iceland. I’ve seen the Northern Lights in Norway, road-tripped across California, Nevada, Arizona, and Utah, and even spent two weeks solo in New York City. These travels helped me regain confidence, test my limits, and build resilience.

However, my condition remained severe. Despite trying multiple biological treatments and every available medication, my health continued to deteriorate. In 2018, surgery became necessary. I underwent two major operations, lived with a temporary stoma, and had my colon removed. Recovery wasn’t easy, but it brought me to a place of stability I hadn’t known in years. I am now medication-free and finally feel like myself again.

Advocacy, Leadership, and Global Collaboration

Living with UC shaped my identity, but it also shaped my career. Despite the challenges, I earned two university degrees, built a career in communication and international cooperation, and have become a recognized voice in global health advocacy.

Here are some highlights of my professional journey:

I have been active in Pacienti IBD since 2013.

In 2016, I was elected to the EFCCA Youth Group (European Federation of Crohn’s & Ulcerative Colitis Associations) in Brussels, later becoming its leader, and then a member of the EFCCA board, representing patients across Europe.

Since 2019, I have served on the Global Immunology Council in Boston, USA, working with researchers, clinicians, and pharma experts.

From 2020, I served as Director of Neuron, the Czech Republic’s largest private science support foundation, promoting groundbreaking research and public engagement in science.

I collaborate with ECCO (European Crohn’s and Colitis Organisation) and a global surgical team to create patient-centered guidelines for surgical solutions in inflammatory bowel disease. I am also a clinical trial ambassador, promoting awareness and participation in trials that improve treatment access and outcomes. As a published author, I regularly contribute to patient-focused materials, clinical publications, and educational resources co-developed with medical professionals. My core areas of focus include mental health in chronic illness, awareness of clinical research, and empowering patients through knowledge and inclusion.

A Message for Others Living with IBD

IBD is not just a physical illness, it can affect every part of your life, including your self-image, relationships, and sense of independence. But it does not define your future.

Through my advocacy and professional roles, I’ve met countless inspiring individuals, from fellow patients to leading surgeons, immunologists, and researchers. Together, we are changing how chronic illness is understood, treated, and lived with.

To anyone who is newly diagnosed or feeling overwhelmed: You are not alone. You are not “less than.” Your dreams are still valid. Life with IBD may not always be easy, it may not always be fair, but with the right care, support, and determination, you can still live boldly, contribute meaningfully, and thrive.