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Association of Gastrointestinal Motility Disorders, Inc. (AGMD)
Monthly Online Newsletter
 
 August 2018
In This Issue
Quick Links
* Announcements
* Be Bold For Gastroparesis - (#BeBold4GP) - Melissa Adams VanHouten 
* Some Myths About Gastroparesis
* Gastroparesis Overview - Melissa Adams VanHouten
*  Gastroparesis Poem - Melissa Adams VanHouten
* Solving A Medical Problem  - Stacy June
* Personal Insights On Living With Diabetes - AGMD Series Of Interviews With Laura Schmidt
* August In Medical History

 

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Announcements

 Gastroparesis Awareness Month

August is Gastroparesis Awareness Month!  According to the International Foundation for Functional Gastrointestinal Disorders, it is estimated that the prevalance of gastroparesis is 24 in 100,000.

Gastroparesis is a digestive motility disorder that slows or stops the movement of food from the stomach to the small intestine.  Symptoms may include early satiety (fullness), nausea, vomiting, bloating, pain, and the inability to hold down food.

There is currently no cure for gastroparesis, and effective treatments are limited.

To learn more about gastroparesis, visit, www.agmd-gimotility.org or the IFFGD

We also encourage you to take part in the many gastroparesis awareness events taking place on social media as well as in various cities and towns.

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 Green Lights For Gastroparesis 

Deb Iamokaynow  started an online and offline  #Green4GP  Awareness feature last year and and it has now become an annual event!

On August 25, 2018, as part of Gastroparesis Awareness Month, w e are asking that you display green candles, lanterns, glow sticks, light bulbs, or even pictures/drawings on your  personal pages and social media sites to honor those who have passed and as a symbol for all who live with this illness. 

And if you are feeling up to it, you can gather with other GPers or supporters in your neighborhood and videotape this, take to the public squares, line the driveways in your subdivisions with green lanterns, burn a candle in the window of your own home, take photos, or simply post a personal picture on your social media sites. You might even light a green candle and go live on Facebook.


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August 5th International Friendship Day

International Friendship Day was originally founded by Hallmark in 1919. It was intended to be a day for people to celebrate their friendship by sending each other cards, but by 1940 the market had dried up, and eventually, it died out completely. However, in 1998, Winnie the Pooh was named the world's Ambassador of Friendship at the United Nations, and in April 2011 the United Nations officially recognized the 30th of July as International Friendship Day; although most countries celebrate it on the first Sunday of August!

In celebration of National Friendship Day, AGMD would like to take this opportunity to thank all our friends both near and far for their continued support of our organization!  A camaraderie automatically seems to develop between patients and families as we share common threads within our journeys with digestive motility diseases and disorders. 


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August 21st Senior Citizens Day

"Senior Citizens Day was created as a day to support, honor and show appreciation to our seniors and to recognize their achievements. Their valuable contributions to our communities create better places to live."

In 1988, President Ronald Reagan declared August 21 to be National Senior Citizens Day.  This observance was established in honor of senior citizens in the US who made positive contributions in their communities. 

"Take time to spend with seniors you know, and listen to their stories of wisdom and experience, gain from their hard-earned knowledge."

To all our seniors, we thank you for all your achievements, mentoring, hearts, and legacies. 

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August 22 Be An Angel Day


August 22 celebrates National Be An Angel Day.  This is a day for celebrating those who do good deeds and are kind to others.  One act of kindness can go a long way. A smile, hug, phone call, message or listening ears can make a huge difference in the life of an individual. Be an angel and tell someone how thankful they are and how much you appreciate them. 

To all our AGMD Angels, we thank you for your financial support, kind words, encouragement and hearts.

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Be Bold for Gastroparesis (#BeBold4GP)
By Melissa Adams VanHouten

August is National Gastroparesis Awareness Month, and we need your help!  
  
Gastroparesis, or "paralysis of the stomach," is a gastrointestinal motility disorder in which the stomach muscles fail to contract and move food through from the stomach to the intestines at the proper rate. It is marked by symptoms such as nausea, vomiting, GERD (or acid reflux), early satiety and stomach/abdominal pain, and it can lead to some potentially serious complications such as extreme weight fluctuations and erratic blood sugars, chronic fatigue, esophageal damage, blockages of the digestive tract, dehydration and malnutrition. Currently, there are no consistently safe, reliable and effective treatments, and there is no cure.
  
The NIH estimates 5 million or more of us live with gastroparesis, but despite our numbers, we are considered an "orphan" disease due to the lack of resources, support, and attention we garner. Gastroparesis is little-known to the public and often misunderstood by healthcare professionals and others who impact our care. And, so, it is imperative that we, as a community, lift our voices in a united front to raise awareness and bring about much-needed change.
  
On a personal note, I began to advocate for the gastroparesis community shortly after my diagnosis (February 2014), upon joining an online support group where members shared stories of their struggle to be heard, understood, and cared for, by not only their loved ones, but also by segments of the medical community blind to the nature of this illness and the requirements of this population. It quickly became clear to me that many of us felt stigmatized and abandoned and were in desperate need of proper care, and, so, I decided I could not remain on the sidelines and do nothing or listen to people who told me I could not make a difference. I decided to "be bold" for the people in my community who feel as if they have no control over their circumstances and to serve as a voice for those who sometimes feel voiceless. I have since been joined by many others who share that desire to make a difference and that passion for change.
  
Collectively, we fight for all involved in our care - loved ones, medical professionals, insurance and pharmaceutical companies, and policymakers - to work together for our good. We wish to be valued as the unique individuals we are, to be believed, and to be treated with compassion and dignity by all who touch our lives. Further, we push for those in power to respect the seriousness of our illness, acknowledge the hardships that flow from it, fund research, support education and awareness, and recognize gastroparesis as the debilitating condition we know it can often be.
  
We work toward a healthcare system comprised of doctors/specialists who are informed about our illness, who are near enough and plentiful enough that we need not travel long distances for treatment, and who are readily available for appointments, so our care is not delayed. We seek physicians who acknowledge our humanity and respect our individual wishes and goals, who are willing to help us understand our care options and collaborate with each other and us to find treatment plans which improve our quality of life, as we define it, rather than abandoning us because we are "too complex" and there is "nothing more" they can do.
  
We urge researchers and pharmaceutical companies to search diligently for innovative, safe, effective, and affordable treatments and cures - and we call for adequate funding of such pursuits. We implore the FDA to streamline processes and expedite new drug approvals, and we ask our insurance companies to cover treatments which we know from personal experience help with our symptoms. We fight to be free to make our own choices and to weigh the risks of medications and therapies for ourselves.
  
We beseech our loved ones to look upon us with compassion and treat us gently, to believe this illness impacts our lives in meaningful and significant ways, and to respect and accommodate our very real physical limitations. We ask for their kindness, patience, and support, for their listening ears and accepting hearts, and for their assistance in spreading awareness.
  
We demand nothing short of a world in which all involved in our care are educated about our illness, comprehend its impact on our lives, offer support, respect our right to self-determination, aid in spreading awareness of our disease, and assist us in getting the help we so desperately need. We hunger for the day where we are no longer overlooked, unknown, taken for granted, mocked, or mistreated, but, rather, where we are heard, cared for, and valued by all those who hold the power to spread our message and transform our care.
  
We in the gastroparesis community face daunting challenges, but we are not without hope, passion, ability, or recourse!  We encourage providers, patients, patient groups, family and friends, and the public to educate others about this life-altering chronic illness. And this August, we invite you to join our #BeBold4GP campaign, as we stand up, speak out, and fight to raise awareness in our quest for better treatments and, ultimately, a cure. (Please see our video presentation at https://youtu.be/n7Db1UWgcXM.)
  
#BeBold4GP and help us usher in the changes we seek!
  
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.
Some Myths About Gastroparesis

Myth:  All gastroparesis patients are thin.

Fact: "Not all gastroparesis patients will be thin; actually many are overweight. "If you really had gastroparesis, you'd be thin" is one of the more damaging myths about the disease, says Dr. Ellen M. Stein, a gastroenterologist and assistant professor at Johns Hopkins University. Obese patients can have gastroparesis and can even require nutritional support if they've recently lost 10% or more of their body weight. 

Myth: Gastroparesis patients do not experience pain. 

Fact: Actually, 46% to 90% of gastroparesis patients have pain, according to study data. 

Myth: Only patients with diabetes have gastroparesis.

Fact: People can also have gastroparesis without diabetes. The most common causes, however, are idiopathic, post-surgical and diabetes.

Resource: Melissa Adams VanHouten

Solving A Medical Puzzle
By Stacy June

As a kid I used to love to put jigsaw puzzles together. Seeing all the pieces come together to make a picture always fascinated me. At 50 years old I still love to put puzzles together. Many times, trying to figure out what has gone wrong in our bodies is much like putting a puzzle together. This is how I often thought of it when I was first seeking answers as to why I was not feeling well.  It took several years and several specialists, but eventually the pieces came together and I - along with my team of doctors - could finally see the big picture.
When you examine just a few pieces of a jigsaw puzzle, you often have little idea how each individual piece contributes to the whole. But as you start to assemble the puzzle, the picture starts to come together.

Sometimes our health problems can be like a puzzle. We have all these pieces and we go to the doctor with the hopes that they will be able to put it all together and the picture of what is going on inside our body becomes clear.

In the beginning, when I first started to feel sick, I had more than one doctor tell me that I was like a puzzle. They would say my medical history was so complicated. I heard many times that all the things going on inside me were all related, but they didn't know how. Just like puzzles which come at different levels of difficulty, so are the different patients a doctor sees. Some patients are like an easy puzzle with just a few large pieces, but sometimes they are more difficult like a puzzle with 1000 tiny pieces. Symptoms and test results are like the pieces of the puzzle. The doctor then has the challenge to put it all together. This process can be quite difficult because many symptoms and test results can be seen in a variety of medical conditions. Not only are many tests not specific, they are also not always sensitive enough to detect a disease even when the condition is present. Doctors are limited by the information that they are able to obtain through diagnostic tests such as blood tests, CT, MRI, biopsies, etc. Also these tests can yield false positives and false negatives. In an ideal world, every disease would have a specific and sensitive test. But this is just simply not the case. This is what makes finding out exactly what is causing someone to not feel well to be such a challenge sometimes.

So how does one go about getting a diagnosis? How does the doctor find out what is wrong? Well...it is like putting a puzzle together. Doctors start one piece at a time. They physically examine you. They listen to your symptoms. They order tests. Sometimes it takes more than one doctor. Sometimes with more unusual and rare diseases it takes a highly specialized doctor who sees patients with those conditions to be able to recognize it. We turn to doctors to try to put our symptoms along with test results together to make a diagnosis. Sometimes the diagnosis is made quickly while other times it can take months or even years. This can be quite frustrating for the patient, of course, who is not feeling well in the meantime. Frequently doctors will try to treat the patient symptoms even if a firm diagnosis has not been made.

Researchers and scientists continue to make advances in improving tests specificity and sensitivity as well as developing new tests for identifying diseases. It is my hope that this will allow for earlier diagnosis and better treatment options.

Stacy has Bachelor of Science degrees in Biology and Medical Technology and did some post graduate work in Pathology. She spends her free time serving in her church as secretary/treasurer, volunteering as a writer for AGMD, and traveling with her husband. She has an autoimmune disease which has caused damage to multiple organs including gastroparesis, slow transit constipation, neuropathy and interstitial lung disease.
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, gastroparesis, GERD, Barrett's syndrome, Neuropathy and depression, AGMD will be conducting a series of short interviews with Laura Schmidt.

Question: When did you get your neurogastric stimulator implanted?

Answer: April 24, 2003.

Question: How long were you in the hospital for?

Answer:  One and 1/2 days.

Question: What did the recovery of the surgery entail?

Answer: Basic wound care. Also, I had to be especially diligent in not straining the area where the stimulator was. The stimulator was in a type of a pocket within the skin.

Question. Did you find the stimulator immediately effective?

Answer: No. I did not.

Question: Describe what your neurogastric stimulator looks like.

Answer: It truly looks like an old Blackberry phone.

Question: Do you still have the original neurogastric stimulator implanted?

Answer: No. I got my second one in December of 2012.

Question: How does the second stimulator differ from the first one?

Answer: With my second stimulator, it was like night and day. The stimulator worked immediately after the surgery.

Question: Can you see or feel any evidence of the stimulator on your body, such as a bump?

Answer: Yes. There is a hard bump in my lower abdomen where the stimulator is right under the skin. It can be seen, but it's not a big thing to me.

Question: How has the stimulator changed your life?

Answer: It took me from be nauseated and vomiting 24/7 to having fewer periods of nausea.



August In Medical History


August 20, 1922 - August 9, 2007 - Akutsu Tetsuzo  Japanese surgeon who built the first artificial heart that was implanted and kept an animal alive. He was a thoracic surgeon at the Cleveland Clinic in 1957 when he was asked by Dr. Willem Kolff to collaborate in the pioneering project. On 12 Dec 1957, it kept a dog alive for 90 minutes. Thus, a new frontier was opened for artificial heart development for humans. Akutsu became assistant director at the Texas Heart Institute, and continued to develop his total artificial heart. Dr Denton Cooley had already implanted the first artifial heart in a human in 1969, but Akutsu was on his team for the implantation of the second human artificial heart at THI in 1981. After that, he returned to Japan and continued taking a major leadership role as a world expert developing the field.

August 22, 1920  - November 8, 2016 - Dr. Denton Arthur Cooley - An American surgeon and heart-transplant pioneer who was the first to implant an artificial heart in a human. In 1960s he performed delicate surgery on the hearts of infants with congenital heart disease, and was the first surgeon to successfully remove pulmonary embolisms. On 3 May 1968, Cooley performed his first human heart transplant. On 4 Apr 1969, because no donor heart was available for a dying 47-year-old patient with diseased heart muscle, he implanted a mechanical heart made of silicone as a temporary measure. The experimental artificial heart was used for 65 hours, and was removed when a human heart became available.

August 26, 1906 - March 3, 1993 -  Albert Bruce Sabin - Polish-American physician and microbiologist best known for developing the first oral polio vaccine (1955), which was administered to millions of children in Europe, Africa, and the Americas beginning in the late 1950s. He was also known for his research in the fields of human viral diseases, toxoplasmosis, and cancer.
August 28, 1878 - February 1, 1976 -  George H. Whipple - George Hoyt Whipple was an American physician and pathologist who shared the 1934 Nobel Prize for Physiology or Medicine with George R. Minot and William P. Murphy for "their discoveries of a treatment of pernicious anemia with a special diet of liver." Whipple began a study in 1920 of the influence of food on blood regeneration. From experiments on dogs bled to reduce blood volume, he found the best food to stimulate the bone marrow for the production of the new red blood corpuscles was raw liver. Other foods, including kidney and apricots were also found helpful. Minot and Murphy applied Whipple's discovery of the value of liver. They designed a special diet for humans with a particular noninfectious disease - pernicious anemia. The three researchers made a major advance with a non-drug treatment of this condition.

August 29, 1904 - June 1, 1979 - Dr. Werner Forssmann - German  surgeon who shared (with  AndrĂ© F. Cournand and  Dickinson W. Richards) the Nobel Prize for Physiology or Medicine in 1956 for the  development of cardiac catheterization. This is a procedure in which a tube is inserted into a vein at the elbow and passed through the vein into the right atrium of the heart. Drugs can thus be passed into the heart. In 1929, while a young surgical resident in a small German hospital in Eberswalde, Forssmann proposed introducing a catheter as an alternative to avoid dangers with the direct injection of drugs into the heart frequently demanded in an emergency. It was believed at the time that any entry into the heart would be fatal. Nevertheless, after practice on cadavers, Forssman experimented on himself. He anesthetized his own elbow,  inserted a 65-cm  catheter in his antecubital vein. Then walked with catheter dangling from his arm, along several flights of stairs to the  x-ray department where he calmly documented the position of the tip of the catheter in the right atrium of his heart. Without pain or discomfort, he had proved that a catheter could be inserted safely into a human heart.


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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.  
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