Category: Community News

Lyfebulb, an online digital platform that empowers people living with chronic illnesses to thrive through education, innovation and connectivity, today announced the launch of IBDLyfe (www.ibdlyfe.com). IBDLyfe is an online community for those living with Crohn’s disease, ulcerative colitis, and irritable bowel syndrome, as well as their support partners, to share experiences, find one-on-one mentorships and help individuals feel supported as they embrace struggles unique to their journey, regardless of their physical location. "There are approximately 2.5 million individuals living with IBD in the US today, the majority of whom are burdened with anxiety and fear about living with this diagnosis for the rest of their lives," said Karin Hehenberger, MD, PhD, CEO and co-founder of Lyfebulb. "IBDLyfe, built by patients and care partners for patients and care partners, can help reduce some of this anxiety by providing a safe, moderated platform to learn from others (including experts) who have walked this path before." IBDLyfe was developed as part of an open...

"A long December and there's reason to believe maybe this year will be better than the last." -Counting Crows On Ten Years, in 2020 In the midst of everything that was 2020, we missed the fact that The Great Bowel Movement turned 10 years old. Ten. A whole decade. We’ve grown up, we’ve watched the community evolve, and we’ve been witness to a changing IBD conversation across the emergence and growth of various platforms. We’ve taken a moment to reflect on what’s changed, what’s stayed the same, and everything that is the anomaly of life in 2020. This is a long (but important, we think) one, so here's what we're talking about: Our Origin Story The Conversation Has Evolved with Technology The Grassroots Stories are Still Incredibly Impactful There Has Been A Shift in Power to Patients Clinical Trial Participation is Critically Important Diversity and Inclusion are (Finally) Top Priorities 2020 Made Us Show Up Our origin story revolves around our time at the Crohn’s and Colitis Foundation’s Camp Oasis, and the...

As a patient of Inflammatory Bowel Disease, have you ever felt lost? What a ridiculous question. We've all felt lost at one time or another. Managing the chronic illness experience is confusing, time consuming, exhausting, and certainly doesn't come with a guidebook. When we recently heard about Pack Health and their entrance into the IBD space, we were extremely excited to see someone else recognize this gap - this need for a guide - and put together a program that actually works to do it successfully. Pack Health works with IBD and other chronic illness patients to be strong partners in the patient experience. The program works by matching you with an expert that's educated and experienced in navigating the specific challenges of IBD, and they do it at a professional level, so they can be trusted to provide reliable and accurate resources. This health coach connects you as a patient, to all the points you manage, and helps you get it all...

HealtheVoices 5: A Little Heart Can Do Big Things We were honored to have attended the #HealtheVoices19 conference: A Little Heart Can Do Big Things. At some point (or probably many points, the conference was a blur!) I was asked, as a first year advisor, how HealtheVoices has changed since its inception. It took me a while to figure out how to respond to this, because honestly, there are so many things, and growth like this takes time to absorb. The first year was like a good first date. We knew there was potential, we had an idea of what we wanted, but we just needed to figure out how to build up. Year two saw some growth and familiarity come into play. By year three, we had found our groove, and from there, a really, really good thing just became greater and greater. The faces that have experienced, and contributed to, HealtheVoices over the years have brought in some different perspectives, and...

"Listen" wasn't the theme of the 2018 #HealtheVoices conference. It was actually Stronger Together. The #StrongerTogether theme was reflected throughout the entire conference, as empowered patient advocates and industry experts came together for valuable sessions on things like podcasting, caregiving, photography, social media, and so much more. Attendees informally got together to host impromptu Facebook live sessions, Twitter chats, and even in-person meetups. Nearly everyone brought their skills to share, enough for the whole class. Collaborate, learn, and become Stronger Together, we did. That same theme was reflected as attendees shared their own disease stories and experiences within their own condition communities. Being diagnosed with one condition made individuals stronger for when a second diagnosis came along. It has made people stronger when chronic conditions turn, and now the patient is the caregiver. Every single person in attendance has grown stronger because of the things life has handed them, and then, because of the communities they've built around them. An empowered patient advocate...