ImproveCareNow Story_of_self


Learning to be comfortable with Crohn's

Hi, I’m Linden. I’m 14, love Broadway music and being part of the show choir at my high school, and I have Crohn’s disease.


A blessing in disguise

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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.


Design and IBD?

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When someone thinks about design, most likely this person associates it with the aesthetics of an object. This is not wrong because creating an aesthetically pleasing product, digital or physical, is part of the profession. But it is much more than the looks of a solution for an identified problem. Design has so much potential to strengthen and give power to a group of people and I am making it my mission to maximise this potential, rather than just focusing on the looks of a product. There are a lot of good examples of how ethnographic research, co-creating solutions with patients & experts, following trends, prototyping and iteration based on user testing can create fantastic product solutions. Because of that, I am exploring the benefit of design for paediatric IBD patients, who unfortunately will have a whole life of disease management ahead of them. Currently, I am working on my master thesis in Advanced Product Design at the UmeĂĄ Institute of Design in northern Sweden and hope to work together with you!

My name is Daan Hekking, I am 24 years old, born in The Netherlands and was diagnosed with Crohn’s disease when I was 18.


My journey with UC

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My name is Norma. I’m 17 and I have battled ulcerative colitis since I was 10. I was born and raised in a small town near Mexico City, but a year ago my Mom and I moved to Los Angeles, California. Currently I am a senior in high school and hopefully next year I'll be attending Harvard University (YEP, HARVARD!).

For years I spent my time looking for someone to blame, it didn't matter who. I blamed myself for not being "normal" or healthy enough. I blamed my Dad (who battles UC as well), and I blamed God. I needed a reason for why I was going through such hell; why I couldn't attend school like my friends; why I had to take so many medications; why I had to go an outrageous amount of times to the restroom. I fell into a deep depression.

The worst part is that, at the time, I didn't realize this was affecting my parents as well. They lived every single step of the way with me. I think that having IBD is awful, but having to watch your kid struggle with IBD must be even more awful.


To my 9-year-old self, thank you

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Imagine this: You’re nine years old and you’re told you have an incurable disease. How would you react?  The way I saw it, I had two options: be afraid of this disease and let it control my life, or embrace the healthy times and make the most of every day. I chose the latter and since my diagnosis I’ve tried to make the most of every day, even if that means just focusing on the smallest of victories.


I'm a fighter.

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My name is Chloe and I’m 18 years old. I graduated high school in June, and currently work as a cashier. I was diagnosed with UC at age 13.


Tools To Get Through A Flare

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My name is Lexa, and I'm 17 years old. I'm currently in high school and I love to travel. I was diagnosed with Ulcerative Colitis (pancolitis) in April this past year.


Asking lots of questions helps me cope with UC

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My name is Mia and I’m 14. I was just diagnosed with ulcerative colitis right as my first year of high school began. One interesting fact that most people don’t know about me is that I love simply spending a day in the city!


I chose resilience

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Watching my mother in tears through the glass window panel, I felt pain. Feeling the wires stuck to my chest, I felt cold. Hearing the heart rate monitor race rapidly, I felt scared. Listening to the anesthesiologist who told me to close my eyes, I felt my worries drift away. I awoke in confusion as I was rolled back to the children’s ward of the hospital in a stretcher. The white walls, patients, and doctors blurred into one as I tried to fight off sleep, but it easily won. After hours of sleeping, I awoke to the sound of the doctor’s knocking. He took a seat at the end of my bed and stared into my eyes with a mixture of compassion and sadness. I anxiously waited for him to speak the words that would change my life forever.


Turning Ulcerative Colitis Into A Positive

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Hi, I’m Luke. I'm 16 years old and attend Providence Day in Charlotte, NC. I have ulcerative colitis. This year, I’m looking forward to traveling to China to play basketball with my school team. Dealing with chronic illness has presented me with two main obstacles: managing stress and being aware of what my body needs (like how much sleep I’m getting and how much I can eat).


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