LOOP

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.

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.

“Health is not just the absence of disease but a state of overall wellbeing.” - World Health Organization

I started my career in health care nearly 20 years ago as a chiropractor specializing in orthopedic rehabilitation and sports injuries. With a background in physical therapy, I spent about nine years focused on post-acute therapy and rehabilitation. Throughout my career, the view of health as described above by the World Health Organization framed my approach to care.

“I’ve learned that people will forget what you said, people will forget what you did, but will never forget how you made them feel.” - Maya Angelou

I am a graduate of Dow Medical College, Karachi, Pakistan. I was the first in my family to seek medical education, having been inspired by the work of programs like Doctors without Borders. My plan for seeking postgraduate training drastically changed when I applied for and received my immigrant visa in the US lottery and came to the United States to seek residency and post residency training in pediatric gastroenterology.

I have had many blessings and learnings that I have had the good fortune of being exposed to in this great adopted country of mine. This is a very brief story of my journey to become involved with ImproveCareNow, beginning as a practicing pediatric gastroenterologist at a participating children’s hospital and leading to my present role as Clinical Director for ImproveCareNow.  

In 2019, the National Alliance for Caregiving, in partnership with the Crohn’s & Colitis Foundation and ImproveCareNow, released the first national report, to our knowledge, on caregiving of individuals with inflammatory bowel disease. Roller Coaster of Inflammatory Bowel Disease: A National Study of Caregivers of Individuals with Crohn’s Disease or Ulcerative Colitis focuses on caregiving for the more than three million Americans affected by the two most common forms of IBD. It was clear from the study that caregivers needed support, with the report providing insight on who provides that support and caregivers’ perception of their capacity to provide care for the condition. The report also includes policy recommendations and next steps that can be taken in order to improve support for IBD caregivers and their families.

In 2020, NAC followed up this study with two additional resources for caregivers and professionals caring for IBD patients and their families.

As we have shared in previous #WINWIN posts, the ICN Engagement Team is committed to gathering and effectively sharing information, knowledge and know-how that may help patients with IBD and their families. In a 2019 survey the Engagement Team asked the ICN Community to share how they prefer to connect, find and receive information. Their responses are helping us learn how to get the right information to the right people at the right time on their IBD journey. In this post we are sharing feedback related to communication and information seeking preferences of patients and patients.

This is a work in progress. Our ultimate goal is to get the right information, to the right people, at the right times and using a method that works for them. We want patients and families to have what they need, when the need it! If you have thoughts to share on these topics, please contact us so we can learn from you!

LOOP is a place for ICN Community members to share their stories – experiences, perspectives, wisdom. Since the blog was created in 2012, hundreds of stories have been shared by patients, parents, clinicians, researchers, collaborators and friends. We've recapped our top five, most read stories from patients about life with Crohn’s disease.

Dear ImproveCareNow Community,

After 15 years as its President and Executive Network Director, my last day with ImproveCareNow will be this Friday, July 31. It has been an exhilarating and profound journey.

The evolution of the ImproveCareNow Community has far exceeded everyone’s expectations—what you are today, none of us dared to imagine when we began in 2006. It is inspiring what the ImproveCareNow Community has accomplished—how you have improved the lives of so many. I have been fortunate to be able to work with you, to steal shamelessly and share seamlessly with you, and to experience your selflessness and compassion. I know you will continue to go far—to go further—together.

Ella and I want to thank you all for your incredible response to our first blog post where we introduced the IV Sweatshirt Project! If you haven’t read our story yet, we encourage you to start there – in it we share about Ella’s diagnosis with Crohn’s disease, our journey to find a treatment that worked for her, and how her experience ultimately led us to create something together to help kids like her stay warm and comfortable while getting infusions.

After a few trials and some delays due to COVID-19, we are excited to share that we have received a solid prototype of our IV sweatshirt design and have been able to test it at our infusion center!