Representative Moran of Virginia Recognizes IBS Awareness Month 2014 in U.S. House of Representatives

April 30, 2014

IFFGD has directly alerted us that yesterday, April 29, 2014, Representative James Moran (D-VA-8), spoke on the floor of the U.S. House of Representatives to recognize IBS Awareness Month and to urge his colleagues in Congress to support research and awareness on behalf of all adults and children affected by irritable bowel syndrome.

For the past few years, Representative Moran has been a consistent supporter of the IBS community.  He was the first cosponsor of HR 842, the Functional Gastrointestinal and Motility Disorders Act of 2013, which is currently still seeking support in the House of Representatives. (See the March 2, 2013 and September 27, 2013 posts for information on HR 842 and how readers who are U.S. citizens can advocate for it.) In the previous Congress in 2011-2012, Representatative Moran was also the first cosponsor of HR 2239, an earlier version of the Act which did not pass.

The full text of Representative Moran’s speech, which was entered permanently into the Congressional Record, can be read on the website of the Digestive Health Alliance (DHA), IFFGD’s grassroots arm, at the link above.

On this final day of IBS Awareness Month 2014, IBS Impact thanks IFFGD for informing us of this development, and of course, Representative Moran for his ongoing support for those of us with IBS. The need for awareness, advocacy, research, funding and community support do not stop when April ends, but continue year-round. Yet, with each passing year, as more legislators learn of and take an interest in functional gastrointestinal and motility disorders, of which irritable bowel syndrome is the most common, it is hoped that we move closer to a day when there are effective national public policies and resources to address many of these issues and unmet needs.


UNC 2014 “Expert Update on Treatment of Functional GI Disorders” Patient Symposium Live and Online June 22-23, 2014

April 22, 2014

The University of North Carolina Center for Functional GI and Motility Disorders has announced that its 2014 Patient Symposium will take place at the Marriott Metro Center in Washington, DC on June 22-23, 2014. This event, scheduled to immediately precede IFFGD/DHA Advocacy Day 2014, is geared to people with functional GI disorders and families and  will include presentations and panel discussions from a variety of leading FGID professionals on the broad topics of the Patient Experience of Functional GI Disorders, Upper GI Disorders, Lower GI Disorders and Complementary Treatments.  As was done for a similar patient symposium at UNC in 2012, most of the first day’s activities will be broadcast live online, allowing anyone in the world with an Internet connection fast enough for audio, video and chat technology to view the sessions and submit questions.

Those who wish to attend the symposium in person will also have access to an evening reception and a second day that offers time for two workshops chosen from several options, which are designed for more direct interaction between participants and the professionals involved. Because of the more personal nature of the discussions and U.S. health privacy laws, this second day of activities cannot be streamed to an online audience.

For those attending the symposium in person, advance registration and a modest fee are required ($15 plus a handling fee of $1.82 per person for “early bird” registration no later than May 31, 2014, $20 plus handling per person from June 1, 2014 onward.) Lunch and break refreshments are included on June 22, breakfast and refreshments are included on June 23.  Registration can be done online through the third-party Eventbrite site.  Please note that the Eventbrite times are set to Pacific time, while the event itself, in Washington, DC, is Eastern time. Click on the appropriate link on the registration page to view a PDF version of the full schedule.

2014 UNC Center for Functional GI Disorders Patient Symposium Registration

People who plan to participate online do not need to register but can go directly to http://fgidpatientupdate.com/ on June 22 at the scheduled times for any presentations of interest.  A link to log on to the live connection will be added to the event page prior to the scheduled date.

Any questions can be directed to the the UNC Center Coordinator, Stefanie, at sjeremia@med.unc.edu

IBS Impact encourages readers to consider this excellent, unique opportunity to interact directly with leading researchers and other professionals in the functional GI field, ask questions and give them feedback on our needs and concerns.


Another IBS Awareness Month and What the Year Has Brought Us

April 10, 2014

by Nina Pan, IBS Impact founder and primary blogger for IBS Impact.

Last year, on April 24, 2013, I wrote a post for IBS Awareness Month that began with some reflections on my personal experiences with IBS, as well as my motivations for IBS Impact. At that time, I had been living with IBS for over five years, and last year marked my sixth April with IBS. I observed how for me and  many other people with IBS dealing with the numerous actual or potential effects on a day to day basis often makes it difficult to recognize when progress is being made, either for us as individuals, or for the IBS community as a whole. I stated that it is only with the passage of time that I have begun to realize how some things are indeed changing, albeit slowly, for the better. In the rest of the post, I pointed out numerous areas in IBS research, IBS treatment, understanding of the impact of IBS on quality of life, increased societal support and advocacy that had seen concrete, positive change in just the five years and six IBS Awareness Months  I had personally experienced.

April 2014 marks my sixth year and seventh April as a person with IBS, and even in the space of a single year, there are steps forward to report.

Progress in the science of IBS:

In the past year, this blog has posted several times on new areas of promising IBS research, including genetics, the microbiome, possible cellular metabolism and the use of magnetic resonance imaging to study gut motility. These varied endeavors are taking place in or with the involvement of many scientists from many countries. See the following posts: October 6, 2013, February 9, 2014 and March 8, 2014, as well as other posts in the Research category of the blog sidebar to see the range of research news and clinical trial opportunities mentioned here over time.

Progress in the treatment of IBS:

Linaclotide, a newer prescription medication already in use in the U.S. for IBS-C, was launched in Europe as Constella beginning in mid-2013. Several other investigational medications and other non-pharmaceutical treatment options such as diet, probiotics and psychological interventions, are always in the research pipeline in various parts of the world. In the spring of 2013, through the advocacy of IFFGD, IBS Impact and others, the U.S. Food and Drug Administration selected IBS, GERD and gastroparesis for the FDA Patient Focused Initiative.

Progress in understanding the impact of IBS and the barriers that remain:

Recently, a large, multi-center study led by Jeffrey Lackner, PsyD of the State University of New York at Buffalo, collaborating with colleagues at Buffalo, Northwestern University, Wayne State University and UCLA, was published showing that contrary to the beliefs of many health care professionals, factors other than gut symptoms, such as fatigue, non-gastrointestinal symptoms and negative social interactions have a large correlation to the perceptions that study subjects with IBS had of their own health. See the article in the American Journal of Gastroenterology and podcast with Dr. Lackner here.  This is research that has gotten much attention in recent weeks and months and seems to validate the lived experiences of many of us with IBS.

Progress in societal supports for people with IBS:

Largely through the efforts of our peers in the inflammatory bowel disease community, additional U.S. states have adopted Restroom Access Acts, popularly known as Ally’s Law, or introduced bills to enact one. These individual state laws have the common goal of allowing people with medical conditions, including irritable bowel syndrome, that may cause urgent restroom needs, to use employee-only facilities in retail stores if no public restrooms are immediately available. See the May 10, 2013 and March 14, 2014 posts.

Progress in advocacy and awareness:

The International Foundation for Functional Gastrointestinal Disorders and its grassroots arm, the Digestive Health Alliance  (IFFGD/DHA)  continue to shepherd the Functional GI and Motility Disorders Research Enhancement Act (HR 842) through its second attempt at Congressional passage, with the support of IBS Impact and other groups and individuals. The Act has picked up several new co-sponsors in the U.S House of Representatives since April 2013. See the March 2, 2013 and September 27, 2013  posts for more about HR 842, IFFGD has also been an ongoing advocate for veterans, who are disproportionately at risk for functional gastrointestinal disorders like IBS. In November 2013, the Pediatric Research Network Act, which IFFGD  joined many other health organizations in supporting, was signed into law. While this law is not specific to IBS or functional GI disorders, the law addresses pediatric-specific medical research, and its resources and insights may translate into gains for children and youth who have IBS or related gastrointestinal conditions.

At least twice in the past year, Douglas Drossman, MD, FACG, has spoken out publicly about his concerns regarding high profile media coverage of IBS or functional GI disorders. (See the September 20, 2013 and January 20, 2014 posts.) Dr. Drossman is the founder of Drossman Gastroenterology, the Drossman Center for the Education and Practice of Biopsychosocial Care, the founder and co-director emeritus of the University of North Carolina Center for Functional GI and Motility Disorders, the current president of the Rome Foundation, and one of the foremost international experts in the field. His work and his voice have been and continue to be influential.

IBS Impact’s site hits for the main site and this blog, as well as followers for this blog and social media continue to increase year by year, and we have reached over 100 different countries and territories with this blog alone. Record daily and monthly hits were reached last November with this post on common misconceptions about IBS.

These are just a handful of examples of forward motion for the  IBS community in the past year.  Cumulatively, there are many more. Obviously, we still have very far to go before all people with IBS have all the medical and social supports that we need for fully productive lives, with or without IBS,  but we have come far as well. There are reasons for hope, especially if more of us do our part for self-advocacy and awareness in the years and IBS Awareness Months to come.


April is Irritable Bowel Syndrome (IBS) Awareness Month 2014

April 1, 2014

April is Irritable Bowel Syndrome Awareness Month. IBS affects, depending on the source, at least 25 million and perhaps up to 58 million women, men and children in the United States and anywhere from 9-23% of the population in different countries on every continent of the world.  In the U.S, this prevalence exceeds that of diabetes, chronic kidney disease, asthma, adults with chronic heart disease, and, by far, inflammatory bowel disease (IBD), with which IBS is often confused.

Unlike awareness weeks and months for these and other common health conditions, it is often difficult to know this unless one follows certain IBS sites, but as time goes on, awareness gradually increases. In 2012, this blog  first published a version of this post as  “10 Things We Can Do for IBS Awareness This Month and Every Month,”  which remains one of the most popular single posts in the history of this blog. It was revised and updated in 2013, and now again for 2014. Here are 10 possible strategies for how people with IBS in any country can increase awareness of IBS. Readers of this blog who are relatives and friends, with the permission of the person with IBS,  feel free to help the cause too.

1) If they do not already know, talk to your family, friends, coworkers, classmates and medical providers about IBS. Having IBS is often an isolating experience, and some people with IBS who have “come out of the closet” have found that the stress of hiding and worrying about who knew and how much they knew actually triggered worse symptoms.  No, not everyone will “get it” and that can be hurtful or tiring, but people without IBS will never learn to understand unless we are willing to tell them. Some of them will help you and it may be the people you least expect. Given that IBS is the most common functional gastrointestinal disorder with prevalence anywhere from 9-23% in different countries worldwide, it’s very likely that some people  you tell will also have IBS or loved ones with IBS. The IBS Impact main website has an entire page of articles specifically for family and friends. Many past posts on this blog are also tagged for this subject, and can be found by using the search box on the right sidebar.

2) If you find the IBS Impact website or blog or any other reputable IBS site useful and interesting, share it with your family and friends, other people with IBS and your health care providers, especially those not currently active in the IBS community.  Knowledge is power. The more people who have good information and resources rather than outdated misconceptions and quacks, the better off we will be as individuals and as a group. IBS Impact also posts to its Twitter and Facebook pages several times a week with scientifically reputable articles, resource links, clinical trial and advocacy opportunities and encouragement from sources all over the globe. If you use these social media platforms, your likes, comments and shares are a quick and low-effort way to participate in IBS awareness and spread the word very quickly.

3) If you’re not comfortable being public, you can still quietly distribute information in public places. IBS Impact has business cards with our logo available free  for the asking. IFFGD has free downloadable awareness posters and other resources. The Irritable Bowel Syndrome Self Help and Support Group online forum based in Canada that draws visitors from many countries worldwide, has a downloadable brochure in English explaining IBS to those who do not have it, with translations in Simplified and Traditional Chinese, Swedish and German on the website. The Gastrointestinal Society, also in Canada, distributes free information packets and pamphlets that can be ordered online and mailed to addresses within Canada.  The IBS Network in the United Kingdom also offers a variety of IBS fact sheets to its paid members. Leave these materials in public displays or bulletin boards in community centers, libraries, medical offices and hospitals, pharmacies, banks, post offices, college campuses, wherever many people go every day.

4) Volunteer to share your story on the IBS Impact sites by using the contact links on the main website. We welcome diverse perspectives from people with IBS and their families and friends, and hope to be welcoming some guest bloggers this month. Because IBS Impact encourages greater openness about IBS, we prefer to be able to post at least your first name. IFFGD also accepts personal stories for its websites, anonymously or with names. IFFGD also occasionally quotes people with IBS in its publications.

5) Interact with the media. When there is coverage of IBS-related topics in mainstream print or broadcast stories or blogs, send or post your comments and corrections. This lets the media and other readers, viewers or listeners know we are out here as a community and that we care about how IBS is portrayed. IFFGD occasionally gets requests from the media to interview affected people. If you are interested, let IFFGD know that it can contact you. The IBS Network also sometimes publicizes requests from UK-specific media. For a past discussion of the media and IBS, see the November 6, 2011  post. Read about a recent advocacy success with a major U.S. media outlet in the January 20, 2014 blog post.

6) Participate in a research study so that scientists become more aware of our needs. Some studies are online or through the mail or phone. We regularly list some open studies on this blog, and on the main website, and/or share them on social media,  and many of the resources we link do as well.

7) IBS Impact is not a charity, but consider donating to one of the GI-related organizations or research facilities in your country. Many are listed on our links and research pages of the main site. It is very important for all non-profits to show that they are supported by their own constituency (the people whom they represent) when they approach other funding sources.  It is true that many IBSers don’t have a lot of money to spare, but even small amounts help. A few years ago, one person with IBS stated that if every person with IBS in just the U.S, the U.K. and Australia alone committed a dollar or pound a month, we’d have over a billion a year. If you’d like, have a fundraiser. IFFGD and other charitable organizations are generally glad to assist their supporters in these efforts. For more on why financial support to IBS entities is important, see this July 22, 2011  post.

8) If you absolutely cannot donate directly, use Goodsearch (in the U.S.)  or iGive  (in the U.S. or Canada) or Everyclick (in the U.K.) as your search engines or online shopping portals on behalf of the gastrointestinal charity of your choice. These sites all work slightly differently, but participating merchants designate percentages of each transaction to specific organizations you indicate. It doesn’t look like much each time, but the amount adds up if you use them consistently. Nothing extra comes out of your own pocket, and the charities do get the money.

9) Write to legislators or policy makers to support issues of importance to the IBS community. IFFGD can help U.S. citizens with current U.S. legislation of concern to functional GI and motility disorders. If you prefer not to go through that organization, you can do so yourself. Often there are separate state issues as well, which, when possible, we attempt to publicize on this blog. The IBS Network occasionally posts U.K. specific advocacy on its website and social media.

10) If you’re ambitious, organize an awareness event, especially those of you who are students or health professionals. Talk to a health professions class or go to a health fair. For another discussion of why IBS awareness is important, see this July 9, 2011 post. GI organizations, including the ones listed above, are often happy to assist their supporters with grassroots efforts if desired.

There are many more than 10 possible ways to advance the cause of IBS awareness worldwide. IBS Impact was founded on the belief that awareness is an ongoing process that should not just happen one month a year, so don’t just restrict yourself to April. But every action, small or large, multiplied by many people with IBS and our supporters moves us closer to a time when IBS is widely understood by the general public and when the medical and social needs of people with IBS as a community can be more easily met.