New Updates to IBS for March-April 2014

March 26, 2014

Many updates to most pages of the IBS Impact main website have been underway recently. Among the changes are updated information and links on the progress of advocacy for the Functional Gastrointestinal and Motility Disorders Research Enhancement Act, also known as H.R. 842. There have also been new resources added on the links page, advocacy page, and IBS and children page. The IBS studies page has been considerably revised. Defunct links for some older material previously on the site are being removed, and some items are being rearranged. The various updates involve resources in four countries that are among the top visitors to IBS Impact.

Please feel free to check out the site here. Our goals with the website, blog and social media are to provide a varied range of current, scientifically accurate, reputable information and resources to people with IBS and their families and friends, and to encourage informed choices, proactive self-advocacy and public awareness of IBS, and the unmet medical or social needs many of us face as a result of IBS.

April is IBS Awareness Month and some intriguing things are also being planned for this blog in the coming weeks, so please check back.

IBS Impact, as an entity, is not directly affiliated with any other organization, site or research sponsor and receives no funding for the information we post on the main website, this blog or our Twitter and Facebook pages. We do welcome constructive collaboration and value the many individuals, websites, organizations and clinical and research entities who continue to support, encourage and amplify our efforts in various ways to benefit the cause of IBS awareness and advocacy worldwide

Comments, suggestions, corrections of outdated links, article submissions, and clinical trials or surveys by researchers affiliated with academic, medical, or pharmaceutical entities or reputable organizations representing IBS or commonly overlapping conditions in any country are all welcome and will be thoughtfully considered. Contact links for the IBS Impact founder and webmaster can be found on the home page of the main site, or comments can be left on this blog.  Thank you to all of our readers and social media followers for your interest and participation.

Delaware Introduces Restroom Access Act (Ally’s Law) in General Assembly

March 14, 2014

UPDATE August 2014: The Delaware Restroom Access Act has become law. Click the link for the full text.

Yesterday, through the social media of Ally Bain, an advocate for the restroom access laws that popularly bear her name, IBS Impact learned that a Restroom Access Act has been introduced in the 147th General Assembly in the state of Delaware. According to various media sources, this appears to be the latest attempt over several years to pass such legislation in Delaware..

The current effort, which is known, as HB 245, has State Representative Trey Paradee (D-29) as its primary sponsor in the Delaware House of Representatives. He is currently joined by seven co-sponsors in the House. In the Delaware State Senate, the bill’s primary sponsor is State Senator Bethany Hall-Long (D-10) Similar to most existing restroom access laws in other states,  the proposed legislation provides that customers of a “retail establishment,” who have an “eligible medical condition” that requires immediate access to restroom facilities must be allowed, on request, to use an employee restroom during normal business hours, if there are at least two employees present at the time, there is no public restroom available on the premises, and allowing use of the facility would not pose a health or safety hazard to the customer or an obvious security risk to the business. Examples of eligible medical conditions specifically mentioned in this draft of the bill are Crohn’s disease, ulcerative colitis, celiac disease, any other inflammatory bowel disease, irritable bowel syndrome, use of an ostomy device or any other medical condition that requires immediate access to a restroom. Acceptable forms of proof that may be requested are a written note from a physician or other licensed medical professional or an identification card issued by a national organization for the medical condition or a local health department that states the person has the condition. The current text of HB 245 is linked here.

Please keep in mind that as it is still pending legislation, there may be changes made in the process of consideration. The bill has just been introduced, and must be passed by the General Assembly and signed by Delaware’s governor in order to become law.  IBS Impact encourages Delaware residents who are also U.S. citizens to contact their State Representatives and State Senators to express their support for the eventual enactment of this bill.

According to a press release on the website of the Delaware House Democrats, the issue of restroom access for individuals with medical conditions was brought to State Representative Paradee’s attention by a 15 year old girl with Crohn’s disease, which is a form of inflammatory bowel disease (IBD), and her parents. Their advocacy appears broadly similar to the past efforts of Ally Bain, who also has Crohn’s disease. Many years ago, Ally had an accident in a store after her request to use the employee restroom was refused, despite her explaining repeatedly that she had an urgent medical need. After that humiliating experience, Ally successfully worked with legislators in her home state of Illinois to pass one of the earliest state laws to address this issue. Ally is now an adult and a student in law school, but was only 14 years old when she began her quest, and she inspired others, many of them also teenagers, to join Ally in advocating for similar legislation in their own states. IBS Impact commends the willingness of these young people to speak publicly of their needs in a way that many of their peers, as well as many affected adults, historically do not.

As of this writing,  IBS Impact is aware of fifteen states having restroom access laws specifically allowing people with medical conditions to use employee-only restrooms in retail establishments: Colorado, Connecticut,  Illinois, Kentucky, Maine, Maryland, Massachusetts, Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Washington State and Wisconsin. As these are individual state laws, they each vary in certain details,  Please see IBS Impact’s previous posts on February 21, 2012, August 20, 2012, and May 10, 2013 for links to the text of the law in each of the states where one currently exists. In most of these states, irritable bowel syndrome (IBS) is specifically mentioned in each law. In Massachusetts and Maryland,  IBS is covered broadly under “any other medical condition requires immediate access to a restroom facility.”

In past years, similar bills been introduced in several additional states, but have not yet passed, requiring continuing advocacy and reintroduction in subsequent legislative sessions.  IBS Impact has reached out to Ally and other self-advocates in the inflammatory bowel disease community in an effort to increase public awareness of the similar concerns of many people with IBS, as well as to offer support toward this common goal. While their diagnosis of IBD is different from IBS in several ways, the experience of gastrointestinal pain, unpredictable, urgent or frequent trips to the bathroom and feeling embarrassed and alone is shared by many people with IBS. The IBD community has generally been much more publicly visible and active in these advocacy efforts relative to people with IBS.  Please see IBS Impact’s previous post on November 2, 2012 for commentary on why it is in the interests of the IBS community to join our IBD-affected peers in pressing for these laws.

Beyond the need to advocate for the laws themselves, there also seems to be a need for increased awareness of the laws that exist among people with IBS, IBD or other bowel or bladder conditions who might benefit from these laws. There is also no centralized source for the status of laws, pending legislation, and advocacy efforts in each state, making it difficult to verify information at times. While IBS Impact does not currently have the resources to be as comprehensive a source for this as would be ideal, over time, this blog has striven to report on as much information on the subject as is readily available. When possible, we have also included links to the laws and to grassroots groups concerned with these issues in certain states.  We encourage readers and followers, both in the IBS and the IBD community, to comment here or to contact IBS Impact privately with additional information or corrections in the future, so that all people with medical conditions causing urgent restroom needs can benefit from this knowledge.

University of North Carolina Study Finds Possible Maternal DNA Link in Small Subset of Irritable Bowel Syndrome (IBS)

March 8, 2014

Many people with irritable bowel syndrome are the only known people with IBS in their families, while others report relatives, sometimes many, who also have or had a diagnosis or symptoms suggestive of IBS and/or one or more of several other chronic conditions that commonly overlap with IBS. This suggests that there are genetic influences in the development of IBS for at least some affected people. Narrowing down precisely what they are has been one of many diverse areas of IBS research in recent years.

A few weeks ago, a team led by principal investigator Miranda van Tilburg, PhD, Associate Professor of Medicine at the University of North Carolina Center for Functional GI and Motility Disorders, published results that show that a small percentage of cases appear, at least in part, to be linked to dysfunction in mitochondrial DNA. Mitochondria are subunits within cells that are involved in generating cellular energy. In human beings, mitochondria are inherited only through a person’s biological mother. Previous medical research has shown that problems with mitochondria also appear to be involved in other functional gastrointestinal disorders, chronic fatigue syndrome, depression and migraines, all of which are commonly overlapping conditions with IBS.

Dr. van Tilburg and her colleagues studied Caucasian adults who included 308 known to have irritable bowel syndrome (IBS), 102 healthy controls and 36 known to have inflammatory bowel disease (IBD). The researchers found probable maternal inheritance in 17.5% of study volunteers with IBS, in contrast to 2% in the control group and 0% of those in the IBD group. The researchers called this a “significant minority” who may have a form of IBS inherited through mitochondrial DNA. Dr. van Tilburg and her colleagues emphasized that the sample size was small, and the results should be replicated with larger groups and further research. There is no single IBS gene per se, that is known at this time.

These are intriguing results that appear to be promising in understanding possible causes of irritable bowel syndrome and, along with other recent genetic and biomarker research as discussed on this blog on February 9, 2014, perhaps collectively leading to usable diagnostic tests and improved treatment options in the long-term future. IBS Impact commends this important scientific work, and looks forward to further progress and answers for our community in the years ahead.