ImproveCareNow Pac


Crohn’s swept life as I knew it out from under me

Hi! My name is Mary and I am 19 years old. I am currently in nursing school. I was diagnosed with Crohn's in 2018. One interesting thing about me is that I have 3 nephews and a niece!


Patient Perspectives on Telehealth and In-Person Care in the Time of COVID-19

COVID-19 – the illness caused by the novel coronavirus (SARS-CoV-2) – has brought unprecedented challenges for both patients with IBD and their care providers. In this post, members of the Patient Advisory Council share perspectives on accessing telehealth and in-person care in the time of COVID-19, and recommendations for improving together.

We believe these perspectives are important for individuals with IBD to review and consider, because the quality of our care is directly tied to our long-term health and wellbeing. If we possibly have less effective care during a pandemic, it can have downstream effects on our health and our lives.


I can overcome obstacles

Hi, I am a 16-year-old high school student diagnosed with Crohn's disease. I am a part of the varsity tennis team, Model UN, French Club, National French Honors Society, and High Pride. The most interesting thing people don't know about me is that I was the champion child of the year for the Children’s Miracle Network at my local hospital.


I’m not sure it’s Crohn’s yet, but I’m building a strong support center within myself

I'm Lexi - a rising high school senior. In December 2019, I was having severe nausea, vomiting, and abdominal pain. The doctor at Urgent Care thought my gallbladder was the cause of my pain and suggested I go to the emergency room immediately to have it removed. At the ER, after many tests, they determined it was not my gallbladder but could not figure out the cause of my pain. I was referred to a pediatric gastroenterologist.


I've begun experiencing more of life

Hi! My name is Laurel and I am a 20-year-old college student, majoring in Human Biology. I was diagnosed with Crohn's disease in 2012 and have been on biologic infusions ever since. One thing many people don't know about me is I absolutely love insects and am minoring in entomology!


Never stop sharing your story!

Recently, I sent my Grandfather from out of town a surprise package. I took the time to search through all of the wonderful LOOP posts made by PAC members and pulled out all the posts I have written. I compiled them into a word document and attached the pictures as well. I made the font decently big and separated each article to make it easy to read. I printed a copy, wrote my Grandpa a note and sent the package on its way to Pennsylvania.


Crohn's disease and my camping merit badge

My name is Benjamin and I am a rising senior in high school. I was diagnosed with Crohn's disease when I was 10 and a half. Since then, I have found joy in art, Boy Scouts, numerous sports, and theatre.


I didn't want people to only think of me as a "sick girl"

I'm Lucy and I'm 19. I just finished my freshman year of college, and I have Crohn's disease. I love dancing, especially tap dance, and I enjoy the outdoors.


Keep Talking About IBD

We believe in the power of storytelling to connect us, help us all teach and all learn, and to remind us we are not alone. We want to encourage you - whether you have experience with IBD already or are learning about it for the first time - to take a moment and experience life with these chronic illnesses through the stories of five of our community members 💚💙


IGNITE - This community has shaped me deeply.

From her home office, Catalina spoke clearly and with great conviction, delivering her narrative directly to…her computer screen. Many of us have become accustomed to hearing Ignite Talks delivered to a packed plenary room at our in-person Community Conferences – and the effect these personal stories have is often palpable. Though it was not the original plan, Cat’s words flowed from her location in North Carolina across hundreds and even thousands of miles, reaching ImproveCareNow community members as they joined our first-ever Live Online Community Conference from their homes and offices. While the distance between was indeed great – Cat’s words drew us in close and (as Ignite Talks tend to do) reignited the passion we all feel for the work of ImproveCareNow - of improving health and care for kids with IBD. And from across the miles, the effect of Cat's words were still palpable:

“Incredible Cat!! Words do not do justice to what you are conveying to all of us - the village of ICN!”

“Inspiring for us all! Makes you want to try even harder!”

“You are incredible Cat!!! Your strength and advocacy is inspiring!!! THANK YOU!!!”

“I'M CRYING”

“You remind us why it is so worth it to keep fighting and working. Thank you!”

“Cat gives me chills.”

*stands up and claps*

“Really beautiful. As a caregiver, I feel your passion and share your sense of purpose. Very well done.”

Experience Cat’s Ignite Talk:


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