IFFGD’s 2021 Virtual Advocacy Event, in which IBS Impact founder, IBS Support Facebook group co-admin, and IFFGD Patient Advisory Committee member, Nina Pan, participated as an invited speaker and advocate, took place March 21-26 2021. See the details and videos of the event at this link.
Throughout 2011-2020, IBS Impact supported IFFGD’s efforts to mobilize the functional GI/gut-brain disorder community to pass the Functional GI and Motility Disorders Research Enhancement Act . IBS is the most common functional GI disorder/disorder of gut-brain interaction. The Act did not pass during several Congresses, but over the years, gained increasing awareness and support among legislators from several states and both major U.S. political parties. The effort to reintroduce the Act has been postponed for other priorities during the pandemic, but IBS Impact is hopeful that IFFGD will return to the effort at an appropriate time in the future.
A link to the most recent previous version of the bill can be found here.
IFFGD’s information regarding the bill is here:
Sign up for IFFGD’s new Advocacy Connection e-newsletter here:
IBS Impact supports the efforts of IFFGD on behalf of military veterans and service members, who are disproportionately affected by IBS and other functional gastrointestinal and motility disorders.
IBS Impact is concerned about the introduction of a new mental health diagnosis that may unfairly label some people with IBS or similarly complex or overlapping medical conditions.
For residents of the United Kingdom, see this page from The IBS Network, the U.K. national charity for IBS, for recent advocacy or awareness issues specific to the U.K.
Read a guest post by the IBS Impact founder, originally published on the Disruptive Women in Health Care blog in April 2011.
Breaking the Silence by Nina Pan
(opens in a subpage of IBS Impact.com. Disruptive Women in Health Care has since been acquired by HIMSS Media, and its website and blog no longer exist. Thank you to Disruptive Women in Health Care for accepting and hosting the guest post for many years.)
Nina is a longtime educator and disability advocate, person with IBS and founder of IBS Impact from the USA.
Read a guest post for IBS Awareness Month on the IBS Impact blog from April 2013
A Lesson Learned From a Young Person With IBS by Lyndin Kane
Lyndin has IBS and lives in Halifax, Nova Scotia, Canada
Read a guest post for IBS Awareness Month on the IBS Impact blog from April 2015
We Should Be Able To Talk About This by Jay Thompson-Munn
Jay has IBS, as well as anxiety and endometriosis, two conditions that commonly coexist with IBS. She also has family members with IBS and other GI conditions. She lives in New Zealand and wrote this especially for IBS Impact.
Read a guest post for IBS Awareness Month on the IBS Impact blog from April 2017
Misinformation, Mystery and Muddling Through IBS by Kathy Kersmarki
Kathy has IBS and lives in Winter Park, Florida, USA. She wrote this post especially for IBS Impact.
Read a guest post for IBS Awareness Month on the IBS Impact blog from April 2018
Looking Back and Paying it Forward: A Life with IBS by Jeni Skukowski
Jeni has IBS, works as a Registered Dietitian, and lives in Connecticut, USA. She wrote this post especially for IBS Impact.
Read a guest post for IBS Awareness Month on the IBS Impact blog from April 2019
IBS: A Personal and Professional Journey by Joanna Baker
Joanna has IBS and is also a Registered Nurse and an Accredited Practising Dietitian. She lives and works in Melbourne, Australia. She wrote this post especially for IBS Impact.
WHAT IS PERSON-CENTERED PHILOSOPHY AND WHY IS IT IMPORTANT?
Simply put, people with IBS should be the primary ones to determine our own needs and make our own choices about issues that concern us, both as individuals and as a community. While those without IBS who support this philosophy can be valuable and welcome allies in our quest,it is our right and responsibility as those most directly affected by IBS to speak for ourselves and to participate actively and openly in the process of constructive change. As is often said in many other advocacy communities, “Nothing about us without us.”
While there has been increasing recognition of IBS in recent years, much of the information about what “IBS patients” experience, need and want is filtered through the perspective of researchers, other professionals or organizations whose mission is not solely focused on IBS and who, sometimes, are not people with IBS. Meanwhile, people with IBS have often had difficulty consistently “amplifying the need,” in the words of one IBS Impact member, from our individual daily concerns about our symptoms to the larger issues that could improve the lives of many: greater public awareness, greater access to expert medical care, IBS education and support systems in our own local communities, funding for research to better understand the causes of IBS and find more effective treatments, and the legislation and public policies to support all of the above.
It is time for people with IBS to see public awareness and self-advocacy as in our own interests and as natural parts of the dialogue about IBS. Let us be equal participants with the professionals and organizations that assist us, and let us work with them to communicate our needs and hopes to researchers, policy makers and the general public with honesty and dignity. IBS Impact specifically uses “person first” language to communicate that we are not merely theoretical “patients” whose sole place is in relation to medical providers who have given this diagnosis of IBS. We are real people with real lives and real relationships that have been greatly affected by IBS, and our honest, lived experiences and opinions are legitimate and important.
Some self-advocacy articles and resources that previously appeared on this page, such as on communicating with doctors, employment, education, and disability benefits, have been moved and added to the Resources page of this site.
Last update to Advocacy page and all links verified: March 2021