Community Voices
The SBS community is integral to what the gutsy perspective aims to do. Not only is our project team made up of SBS community members, but we also commit to providing many avenues for others in the community to participate and shape the project. We see our engagement with the community as an ongoing conversation; results from community engagement opportunities will be featured on this page and accessible to all.
Collaborative SBS Community Resource for Rare Disease Day
In honor of 2024 Rare Disease Day, the gutsy perspective, collaborated with multiple patient organizations in the SBS community, whose efforts also uplift and empower people living with Short Bowel Syndrome (SBS), to create a first-of-its-kind resource, a summary of support organizations and their available services & resources for a patient or family member navigating the SBS journey and ways to connect with those who understand. .
This guide symbolizes a collective promise to ensure those with SBS are not just seen, but truly understood. It’s a testament to the unwavering dedication of our community to stand united in support of one another.
Thank you to Ironwood Pharmaceuticals for their support and funding for development.
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SBS in 6-word stories for
SBS awareness month
We asked the SBS community, "In exactly six words, please describe your quality of life." The answers create a snapshot of SBS life from our gutsy perspective. For 2023 SBS awareness month in collaboration with Emily Hoopes, the founder and administrator of Short Gut Syndrome Patient, Family, and Professional Support Groups, we shared a couple of stories every day in the month of August. Visit the gutsy perspective facebook page for all the 6-word stories.
Information access and support needs survey
This survey is closed. Thank you to everyone who participated in the survey. We are currently analyzing the results and plan to give the community the findings in 2024. The survey included questions about adults with SBS/IF needs and how & where they find information and support and their unmet needs. Some of the initial results were shared in a poster presentation at the 18th Congress of the Intestinal Rehabilitation and Transplant Association (CIRTA) in July 2023. Click here to view poster.
gutsy secret campaign for SBS awareness month
Thank you to everyone who sent us their pictures. We are grateful for your vulnerability and willingness to share.
Our campaign for SBS awareness month in August 2022 recognized the different ways patients and caregivers adapt to and cope with SBS life. We asked people to write down an action, thought, habit, or behavior they do that relates to life with SBS, or something they wish others understood about them.
Each photo speaks to the various ways we adapt to and cope with life with SBS- they speak to challenges and struggles but also to strength and resilience! Remember you are not alone in your experiences!
We are committed to continuing to shed light through community-driven research in hopes of increasing awareness and fostering a better understanding of SBS experience.
Rare Disease Day campaign
We are excited to share this video in recognition of the short bowel syndrome community on Rare Disease Day. Thank you to all of those who sent us their pictures!
These photos speak to the multidimensional nature of the SBS experience- they speak to challenges and struggles but also to strength, resilience, and gratitude.
We are committed to continuing to shed light on the SBS experience and bringing the SBS community together through community-driven research.
On this day, and all other days, let's remember we are powerful when we come together.
SBS/IF mini community survey results
Having completed our exploratory quality of life study, which was only available to the members of our stakeholder committee (see some of those study results here), we wanted to ensure that the broader SBS/IF community has the opportunity to share what matters to them in terms of quality of life. Amazingly, we received a total of 128 responses in just a few weeks! The infographic below provides an overview of who completed our survey.
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