In one moment, someone's life will be forever changed by a digestive motility disorder. 
We understand. We care. We are here to serve you.

Association of Gastrointestinal Motility Disorders, Inc. (AGMD)
Monthly Online Newsletter
 April 2018
In This Issue
Quick Links
* Announcements
* AGMD New Survey And Last Month's Results 
* Clinical Trial Considerations - Melissa Adams VanHouten
* Some Helpful Clinical Trial Resources - Melissa Adams VanHouten
* IBS Awareness Month: Dispelling Myths About This Common But Little Understood Condition - Tegan Gaetano (IFFGD)
* AGMD Search And Research
* Personal Insights On Living With Diabetes - AGMD Series Of Interviews With Laura Schmidt
* April In Medical History - AGMD



IBS Awareness Month

Irritable bowel syndrome (IBS) is a group of symptoms that occur together, including repeated pain in the abdomen and changes in bowel movements, which may be diarrheaconstipation, or both. With IBS, these symptoms occur without any visible signs of damage or disease in the digestive tract. According to Dr. Mark Pimentel, "recent estimates indicate that there are 45 million people with IBS in the United States. 
This includes all 3 types of IBS: mixed IBS (IBS-M), which comprises approximately 30% of IBS patients; IBS with constipation (IBS-C), which also comprises approximately 30% of IBS patients; and IBS with diarrhea (IBS-D), which comprises approximately 40% of IBS patients. Thus, IBS affects a very large population, which is why the condition is so expensive in terms of health economics; there is a very large number of patients undergoing numerous procedures and expensive testing." 

You can find additional information about IBS at:  AGMD,   The IFFGDNIHCedars Sinai Kate Scarlata, RDN


National Autism Awareness Month

Autism spectrum disorder (ASD) is a complex developmental disability; signs, which typically appear during early childhood, affect a person's ability to communicate and interact with others. ASD is defined by a certain set of behaviors and is a "spectrum condition" that affects individuals differently and to varying degrees. There is no known single cause of autism, but increased awareness and early diagnosis/intervention and access to appropriate services/supports lead to significantly improved outcomes.  The CDC estimates 1 in 68 school-aged children have autism. Gastrointestinal motility disorders are among the most common conditions associated with autism. 
You can find additional information about autism at: Autism Society and 


Parkinson's Awareness Month

Parkinson's disease is a chronic, degenerative neurological disorder that affects one in 100 people over the age of 60. While the average age at onset is 60, some people are diagnosed at 40 or younger. There is no objective test, or biomarker, for Parkinson's disease, so the rate of misdiagnosis can be relatively high, especially when the diagnosis is made by a non-specialist. Estimates of the number of people living with the disease vary, but recent research indicates that at least one million people in the United States and more than five million worldwide, have Parkinson's disease.  There has been an increase in research and understanding regarding the dyfunction of the gastrointestinal system in patients with Parkinson's disease. The entire gastrointestinal tract may be affected, potentially causing problems including oral issues, swallowing problems, delayed gastric emptying and constipation. In addition, small intestinal bacterial overgrown and Helicobacter pylori infections may affect motor fluctuations by interfering with the absorption of drugs used to treat Parkinson's disease.  

You can find additional information at: The Michael J. Fox Foundation


2018 Oley Consumer/Clinician Conference

The Oley Foundation will be holding its 2018 Consumer/Clinician Conference in Memphis, Tennessee on June 24-27. Each year the Oley Foundation gathers 400-500 consumers, caregivers, clinicians and members of industry for a unique educational and social opportunity centered around home tube feeding and IV nutrition. In addition to medical updates from clinical experts in the field of nutrition support, patients learn from other patients and members in the industry about products and coping strategies that can greatly improve their daily living. 


April 15-22, 2018, is National Volunteer Week

Volunteer service is a wonderful way to share your skills and talents in the service of others.  You can make a difference!  

We welcome you to explore the many volunteer opportunities AGMD has to offer. Please contact us for further information.

New - AGMD Monthly Survey

Thinking about only the physician who provides the bulk of your digestive motility care, do you feel your doctor listens to and believes you? 

The Results Of Last Month's Survey Are Here

Thanks to all who responded to last month's survey question!  Thus far, there have been 19 respondents.  Our ongoing surveys encompass all types of digestive motility disorders, and as the poll remains open, we encourage you to continue to respond.

Clinical Trial Considerations
By Melissa Adams VanHouten

One option many patients consider when looking for effective treatments is taking part in a clinical trial. Clinical trials can be beneficial to both the participant and the disease community at large, as they often serve to give us a better understanding of the disease, lead to improved treatments, and are responsible for many major medical advances. The potential benefits are notable, but, as a patient, you should also be aware of the possible risks and burdens associated with clinical trials. With careful evaluation of all the factors, you can decide whether a clinical trial is right for you.
Federal regulations require that clinical trials meet certain safety and review standards designed to protect the patient. These include the evaluation of related-research studies and non-human lab testing; the establishment of pre-approved study protocols; ongoing monitoring of the trial by researchers and safety boards; and a detailed informed consent process, which includes information about the purpose, procedural requirements, duration, and potential risks and benefits involved. These are important safeguards, but consider the following as well:
* Some patients sign consent forms without truly comprehending the "fine print." Do not be afraid to ask questions. These documents can be lengthy and can contain technical language and complex requirements. Do you fully understand the issues being raised in the informed consent process? Do you have additional questions regarding these requirements and/or the possible risks and benefits of participation, or do you need further explanation?
* Some trials require travel to medical centers and other treatment locations. How much time and travel will be involved in the trial? Will these requirements be burdensome for you and your family/caretakers?
* Will there be additional costs associated with study-related travel or medical care and, if so, will insurance cover these costs?
* What will be the likely physical effects or possible side effects of the medication and/or related procedures in both the short-term and the long-term? How will these affect your daily life?
* How does the study medication/treatment compare to treatment options currently available to you? Have you exhausted the existing choices or is there something clearly different about the study treatment which could be advantageous to you?
* Many studies require you stop your current medications. What impact will this have on your physical, mental, and emotional health? Can you stop your current medications immediately without harm or will you need to plan for a tapering-off period prior to the study?
* How will it affect you mentally and emotionally if you receive a placebo or if the trial medication fails to help you?
* Will stopping the study medication suddenly (for example, if you wish to exit the study) cause harm? If you experience adverse effects, how will these be addressed?
* Will you be informed of the study results? Will you be able to speak with other study participants about their experiences?
* Will you have access to the study medication/treatment after the trial ends if so desired?
* Who is funding the study? Do you consider this a conflict of interest or believe it could affect the study in a negative way?
* Related past studies may be available for your review. Perhaps doing your own research regarding relevant studies and topics can help you reach a decision.
* Your doctor may have additional information about a particular trial and might be willing to discuss with you the potential risks and benefits as they relate to your individual medical history and health needs. It never hurts to ask!
Being an educated and engaged patient can help you answer these sometimes difficult questions and assist you in better assessing the potential costs versus benefits associated with clinical trials. You have a right to ask questions, receive clarification, and fully understand the risks and requirements of the study before participating. And remember, you may leave the trial at any time if you are uncomfortable with the requirements, the effects of the treatment, or the manner in which the study is being conducted.
If you need assistance in finding available trials, consider reaching out to the medical professionals involved in your care or to local medical centers and universities for additional information about available opportunities. Please review the links and materials listed in the "Resources" section of this newsletter for further discussion of clinical trials and for a comprehensive listing of trials being offered in your area.
Melissa Adams VanHouten is a former university political science instructor and corporate trainer who holds a B.S. in Political Science from St. Joseph's College and an M.A. in Political Science from Indiana State University. After being diagnosed with gastroparesis in February of 2014, she became a passionate advocate for those in her community who feel voiceless and ignored. Currently, as the Association of Gastrointestinal Motility Disorders (AGMD) Patient Education and Advocacy Specialist, co-author of the book, "Real Life Diaries: Living with Gastroparesis," and creator and administrator of several online support and advocacy groups, she spends her days advancing the cause of those who struggle to live with the sometimes devastating and life-altering effects of gastroparesis and other digestive diseases. It is her fondest desire to empower others to advocate for awareness, better treatments, and, ultimately, a cure.

IBS Awareness Month:
Dispelling Myths About This Common
But Little Understood Condition
By Tegan Gaetano

It may come as a surprise to many, since it ' s often regarded as a trivial condition, but irritable bowel syndrome (IBS) is one of the most prevalent and burdensome chronic conditions reported by patients. An estimated 10 to 15 percent of the population worldwide - 30 to 45 million people in the United States alone  - are affected by IBS. It ' s been cited as the second-leading cause of work and school absenteeism (second only to the common cold) and was found to cause those affected to restrict their personal and professional activities an average of 20 percent of the calendar year (73 days)! But, despite the high prevalence and well-documented burden, much about IBS remains unknown, and myths and misconceptions about the disorder are common among patients as well as the general public.
April is IBS Awareness Month. First designated by the International Foundation for Functional Gastrointestinal Disorders (IFFGD) in 1997 to bring awareness to this often misunderstood condition, IBS Awareness Month is now recognized nationwide. During this time and throughout the year, IFFGD works to dispel myths surrounding this diagnosis and encourage those who may be experiencing symptoms to talk to their doctor.

Here are three common IBS myths:
  1. It's just stress. Life is full of stressors. These stressors - whether physical, emotional, dietary or hormonal - cause gut reactions in most people. While stress will not cause a person to develop IBS, it can exacerbate symptoms in many people with the condition. Identifying and addressing stressors that may be associated with IBS symptoms can help those affected reduce or avoid these stressors in the future and decrease symptoms.
  2. It must be something I ate. Many sufferers believe that IBS symptoms will disappear when they find the right diet. But the effect of diet on IBS varies from person to person. For some, one or more foods clearly trigger symptoms, and for them, it makes sense to make adjustments to their diets. However, it is important to keep in mind that in some cases, simply eating a meal will trigger symptoms and that few IBS sufferers can control their symptoms through dietary changes alone.
  3. IBS isn't serious. While IBS does not cause physical damage and will not increase the risk of developing colon cancer, inflammatory bowel disease (IBD), diverticulitis, or other bowel disorders, it can greatly diminish a person's ability to fully engage in their day-to-day activities. Symptoms of IBS can range from mild to debilitating, with unpredictable symptom episodes that can change over time or even from day to day. Diarrhea can alternate with constipation, and abdominal pain can spark unexpectedly making establishing a regular routine difficult.

Having IBS gives you something in common with literally millions of people who live with the disorder every day. As with other chronic gastrointestinal conditions, controlling IBS starts with a proper diagnosis, educating yourself about the disorder, and working closely with a doctor or other healthcare professional to find a treatment approach that works for you. For more information on IBS symptoms, diagnosis, treatment and quality of life issues, go to About IBS.


AGMD is grateful to Tegan Gaetano and the IFFGD for submitting this article and for the incredible work they do for the digestive motility community.

AGMD Search And Research
The AGMD has started a new section of interest to our members. We encourage patients and family members to submit questions and/or responses to When responding, please indicate the question number you are answering.

It is always humbling when a person is willing to post a question in desperate need of a response and also to see those who going through difficulties, willing to reach out to others to help. We hope you will take a moment to send in your questions and/or responses to those who have posted inquiries.

1. Question: Ten years ago, I was diagnosed with gastroparesis and I'm having more trouble coping than ever before.  The depression and anxiety are off the charts. Although I have an appointment with a psychiatrist, they seem to have no idea how to deal with a gastroparesis patient. I am a 54-year-old female and feel lost. (Extracted from our AGMD Inspire site)

2. I'm guessing I'm not alone in this. My workplace has regularly scheduled lunches and this presents two problems for me. First, there are times when I can't eat any of the food available in which case, I just have something to drink. This is awkward though because everyone else is eating. Also, people inevitably, ask me why I'm not eating. I just tell them I have a gastrointestinal disease and leave it at that. Second, the appetite has nothing to do with when most people get hungry, (breakfast in the morning, lunch around noon and dinner in the evening.) The problem is that when food is presented that I can eat, I might not be at all hungry at the time. For example, today, something was served that I could eat and I ate it, but now I don't feel well because I wasn't truly hungry enough. I suppose in the future I can do what I mentioned for the first issue: simply have something to drink. What do others do? Do you have strategies you've come up with that work?   (Extract from our AGMD Inspire site)

Interested in joining our AGMD Inspire site? Visit: AGMDInspire.

Personal Insights On Living With Diabetes
AGMD Series Of Interview With   Laura Schmidt

In order to gain a better personal perspective of life with diabetes, AGMD will be conducting a series of short interviews with Laura Schmidt.

Question: What was your life prior to being diagnosed with diabetes?

Answer: Before I was diagnosed with diabetes, I was a typical kid. A little bit overweight, but otherwise, just a normal kid.

Question: What symptoms were you getting that prompted a doctor visit for diabetes?

Answer: I lost twelve pounds in one day and my mother counted 23 visits to the bathroom and my drinking because of excessive thirst in one night. My mother was a 5-year type 1 diabetic, so she recognized the symptoms.

Question: At what age were you diagnosed with diabetes?

Answer: I was diagnosed with type 1 diabetes at the age of 10 years, 2 months old.

Question. How did you adjust to being diagnosed with diabetes?

Answer: I had no choice. In those days, diabetes was much hard to control, and it made it a 24/7 job to try and manage my blood sugars.

Question: What were treatments like for you during those early years of being diagnosed with diabetes?

Answer: During those early years, the only insulin available was from pigs and cows. It was a less than a great solution, but that was all that was available.  Testing blood was nearly a waste of time. The only way to test blood sugar was to use a kit that contained an eyedropper, test tube, and a special tablet. I would have to add drops of urine and water into the test tube, place the tablet in the test tube, which would fizzle when applied to the liquid, and then I would have to compare the color to a chart. This would only give a very rough estimate of where my sugar was approximately 4 to 6 hours prior, which would make managing insulin doses extremely difficult. Managing life was a guessing game. Even the doctors had a tough time helping their diabetic patients. There were many complications in those days, which could arise from diabetes. Some of these complications were drastic such as loss of a limb or even loss of life.

Question:  Name a few ways in which diabetes impacted your life.

Answer:  I was ill a great deal of the time due to high blood sugars. I was hospitalized many times as a teenager in diabetic ketoacidosis. I have had many side-effects including diabetic retinopathy. At that time, I was told that I would never see the age of 40. Life was basically, do what I could to get through my days. It made working difficult with fluctuating blood sugars.

Question: What advice would you give other newly diagnosed diabetics?

Answer:  With today's advancements in medicine, keep faith. The new types of synthetic insulin, blood sugar monitors, and insulin pumps have made living with type 1 diabetes much more manageable  and livable.

Question: Name something you learned about yourself once being diagnosed with diabetes.

Answer: Having this illness also helped me to become a very empathetic person. I believe it has made me a better, more caring person. 
April In Medical History

April 3, 1778 - February 18, 1862 - Pierre-Fidele Brentonneau - Physician and epidemiologist who performed the first successful tracheotomy to save a patient with layrngeal diptheria from suffocating. 
In 1825, he made an incision of and entrance into the trachea through the skin and muscles of the neck. (Four previous attempts had  failed.) Bretonneau was the first to distinguish typhoid from typhus. He was also the first to clinically describe diphtheria, which he named (Traité de la Diphérite,1826), a contagious  condition, characterized by the presence of a false membrane in the pharynx or larynx. He derived the word derived from a Greek word meaning leather or hide. He also enunciated a theory of specific causes of infectious diseases, in which he foreshadowed the germ theory of  Louis Pasteur.

April 4, 1835 - October 7, 1911 - John Hughlings Jackson - An English neurologist whose studies of epilepsy, speech defects and nervous system disorders arising from injuries to the brain and spinal cord remain among the most useful and highly documented in the field. He was one of the first to state that abnormal mental states may result from structural brain damage. Jackson's epilepsy studies initiated the development of modern methods of clinical localization of brain lesions and the investigation of local brain functions. His definition (1873) of epilepsy as a "sudden, excessive, and rapid discharge" of brain cells has been confirmed by electroencephalography, a method of recording electric currents generated in the brain.

April 9, 1901 - November 4, 1989 - Howard A. Rusk - American physician who founded the science of rehabilitation (also known as physical therapy), which he established through efforts to rehabilitate wounded soldiers during WWII. He established the Rehabilitation Services in the Air Force for the casualties returning from combat. The program operated in 215 hospitals and 12 rehabilitation centers. Now this specialized medical service is aimed at rehabilitating persons disabled by such diverse problems as fractures, burns, tuberculosis, painful backs, strokes, nerve and spinal cord injuries, diabetes, arthritis, speech impairments and more.
April 12, 1853 - January 26, 1925 - Sir James MacKenzie - Scottish cardiologist, pioneer of the study of cardiac arrhythmias. He was first to make simultaneous records of arterial and venous pulses to evaluate the condition of the heart, a procedure that laid the foundation for much future research. MacKenzie also drew attention to the question of the heart's capacity for work, paving the way for the study of the energetics of the heart muscle. His work was particularly important in distinguishing atrial fibrillation and in treating this common condition with digitalis. In 1892, he built a machine for detecting and recording physiological activity, such as pulse rate and blood pressure, since known as a polygraph.

We Welcome Your Submissions and Feedback!  

Do you enjoy writing? Whether you keep a blog, journal, or just enjoy writing in general, we would love to hear from you!

AGMD welcomes and encourages patients and family members, as well as those in the medical, nutritional, and related healthcare communities, to share their stories and heart with others so that they may not feel so alone. If you ha ve thought about writing articles, submitting poems, sharing your photos, or providing helpful tips, why not take a moment to enlighten others? Your words will be helping so many people! 

Please click on the following link for submission guidelines:  AGMD Newsletter Submission Tips and Guidelines.
Please note that submission of content is not a guarantee of publication, and AGMD reserves the right to edit all submissions as needed.   Email submissions to:  AGMD Lighthouse .

Don't miss out on The AGMD Beacon, 
AGMD's quarterly publication for members!    
Included in each issue 
Advances in medical science, genetics, and clinical trials 
Learn about diagnostic testing 
Focus on a specific digestive disorder
Spotlight on inspiring patients and caregivers  
Articles on health insurance, pediatrics, and mental health   
Tips for our tubie readers 
Humor, puzzles, poetry, and inspiration 
Photo gallery of members, family, and pets
And more!

Interested in receiving this premium content? Join AGMD as a member with a suggested donation of $35.
AGMD offers an exempt program for those unable to afford dues
The Association of Gastrointestinal Motility Disorders, Inc. (AGMD) is a non-profit international organization which relies on membership dues, corporate sponsorship, grants, and the generosity of individuals for funding. In 2016, we commemorated our twenty-fifth anniversary. It was a time to celebrate, but also a time to evaluate if our financial needs could continue to meet our many future goals and programs.

We ask for your tax-deductible donations throughout the year as a way of showing your support and commitment to our organization and its important mission.
AGMD is tax-exempt under section 501(c)(3) of the Internal Revenue Code.
Employee Identification Number: 04-3125259
Our Mission

AGMD serves as an integral educational resource concerning digestive motility diseases and disorders. It also functions as an important information base for members of the medical, scientific, and nutritional communities. In addition, AGMD provides a forum of support for patients suffering from digestive motility disorders as well as their families.  
Association of Gastrointestinal Motility Disorders, Inc. (AGMD)
  Serving as a Beacon of Hope since 1991!
Phone:  781-275-1300
Address:  140 Pleasant Street, Lexington, MA 02421
AGMD Inspire Online Community
The AGMD Lighthouse is published monthly, by the Association of Gastrointestinal Motility disorders, Inc. (AGMD).  All AGMD members receive an automatic subscription included in their membership.
The opinions expressed in this publication may not necessarily be the opinions of AGMD. In addition, the organization may not necessarily endorse a product, advertisement, or event described in the publication.
The information contained in this publication should not be used as a substitute for professional medical care or advice.  
AGMD has made every effort to insure accuracy of information, however, the organization is not responsible or liable for inadvertent materials.
The AGMD Lighthouse is a copyrighted publication. No content may be copied in any form, either in part or in its entirety, without the expressed written consent of AGMD.
Inquiries and permission requests may be addressed to the AGMD International Corporate Headquarters. For previously copyrighted and published articles submitted by professional and/or general members, AGMD must have secured release permission from both the author and publisher.