ImproveCareNow Pac


In reality, vulnerability is a sign of strength.

 

Hey! My name is Caitlyn, I'm an 18 year old freshman in college. I was only just recently diagnosed with Crohn's disease in December of 2020, but I have struggled with symptoms for a while. An interesting fact about me is that I grew up in a military family and have lived all over the country.


There is no better outlet for understanding your diseases than through other patients

My name is Nicole and I am 21 years old. I was diagnosed with Crohn's disease on my 16th birthday and Primary Sclerosing Cholangitis (PSC) just a few months later. These diagnoses were heartbreaking, but I did not let them stop me. I am graduating magna cum laude with a Bachelor's of Science in Biology and will be returning to my hometown of Cincinnati, Ohio to work as a Genetic Counseling Assistant to pursue my passion in genetics.


IGNITE - Learning to give myself grace.

Fionna is an active member of the Patient Advisory Council, and is currently co-leading their communications taskforce. In this role, she is collaborating with other PAC members and ImproveCareNow to bring the stories and voices of the PAC to even more people in new and exciting ways. This spring she helped to launch the imPACt podcast, which is a new way to connect with and listen to young people talking about life with IBD. It is through the PAC that Fionna was recently able to tap into support, understanding and validation as she coped with a UC flare. She credits the PAC and this experience with helping her shift her mindset about healthy resilience, exploring the benefits of opening up and being vulnerable, and learning how to be flexible and give herself grace during tough times.

Be inspired by Fionna's #IgniteTalk 🔥


Episode 5 of the imPACt podcast - Managing School with IBD

I'm Vanessa - one of the PAC communications team leads - I am currently a HS junior and on tennis team. I've had to learn how to talk to my teachers, coach, teammates and friends about Crohn's and tell them when I feel sick or have an infusion. Being open has helped me build trusting relationships with them. Managing IBD, school and sports is definitely a challenge, but having a strong support system and being able to communicate with them openly has made it a lot easier to succeed. I'll be talking more about it on the podcast today - join me!


Taking Care to the Next Level - How Patients are Making a Difference

Mahalakshmi (Maha) Parakala is an active member of the Patient Advisory Council and currently serves a co-leader of their recruitment taskforce. She is a LOOP contributor, has presented during ICN Community Conferences, has co-developed IBD resources, and recently co-hosted an episode of the new imPACt podcast. At our Spring Live Online Community Conference, Maha shared her story about discovering patient advocacy and the role it has played in her life during our Engagement Plenary Better Together: Growing our CIRCLE Community to Take Care to the Next Level.

Please enjoy Maha's presentation, which we have shared both as a video and in transcript form, below:


Living with IBD is definitely a struggle, but it really does make me a stronger person.

My name is Mira, I am a 15 year high school freshman. I was diagnosed with ulcerative colitis when I was 11. An interesting thing most people don’t know about me is that I’ve been to 25 countries.


An issue may seem like an insurmountable mountain, but there is always the other side.

Henry Brittain

Hello! My name is Henry, and I am a 14 year old freshman in high school. I was diagnosed with Crohn’s disease when I was nine. Most people don't know  that I was born in NYC but moved to Charlotte, NC when I was six months old.


Episode 4 of the imPACt podcast - Self-Advocacy & Transition

At the Spring ICN Community Conference, PAC members led breakout sessions on the important topics of self-advocacy and pediatric-to-adult transition. In this episode of the imPACt podcast we continue the conversation about these topics with special guest, and PAC alumna, Sami Kennedy. 


PAC Moment: Stress, self-care & school

PAC members weigh in on how they like to manage stress and take care of themselves leading up to school exams or the end of a semester. Here is what they said:


My niche will be to write about my experiences with different foods and UC

My name is Nikhil and I am 17 years old. I am currently a junior in high school, and I was diagnosed with ulcerative colitis in September 2016, when I was 12. One thing most of my friends don't know about me is that I absolutely love going to school. There is just something about learning new information that makes me feel great. 


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