Thursday, March 27, 2008

Welcome to Mary-Angela's Blog

According to the Johns Hopkins Marvin M. Schuster Bayview Medical Center, there are more people suffering from digestive motility disorders than there are Americans suffering from AIDS or coronary heart disease.

There are many different types of digestive motility diseases and disorders including some of the more common ones such as irritable bowel syndrome (IBS), gastroesphageal reflux disease (GERD), fecal incontinence, diarrhea, and constipation. There are also some rare forms such as chronic intestinal pseudo-obstruction, Hirschsprung's Disease, and gastroparesis.

The impact that these diseases and disorders can have on a person’s life can be most profound. Digestive motility diseases and disorders can affect anyone at any age. In some cases, the disease can be from genetic causes. In other circumstances, they can be secondary to an underlying disease such as diabetes, Parkinsons' disease, scleroderma, muscular dystrophy, or lupus, etc. There may also be no underlying disease causing the problem. Many patients may not even look ill even though they are suffering greatly from a digestive motility disease. This can lead to many misconceptions about these digestive problems and the patient. Many patients feel very much alone in their suffering. It can greatly impact their lives and the lives of their loved ones.

The purpose of this blog is to shed light on specific digestive motility diseases and disorders and to cover some of the major issues that patients and their families must confront in coping with these problems.

I am a longtime patient suffering from multiple digestive motility diseases as well as other non-digestive motility problems. The digestive motility diseases and disorders that I have include chronic idiopathic intestinal pseudo-obstruction, gastroparesis, diffuse esophageal spasm, achalasia, dysphagia, and gastroesophageal reflux disease.

The Association of Gastrointestinal Motility Disorders, Inc. (AGMD) is a nonprofit international organization dedicated to serving patients suffering from digestive motility diseases and disorders as well as their families. In addition AGMD serves as an important resource and database for those in the medical and scientific communities. I am honored to have started this organization in 1991 and have been humbled by the stories and lives of so many people affected by these diseases. If AGMD can be of any help to anyone, please contact the organization. AGMD has been serving as a "Beacon of Hope" for over 17 years.

If you have a specific topic or issue that you would like me to cover in this blog, please let me know.

It is my hope that more people will be aware of digestive motility diseases and disorders and what patients and families must go through on a daily basis.


Wendy said...

What a wonderful thing you are doing - out of your own pain - to have this blog.
My one-year-old granddaughter has been suffering from GERD almost since the beginning.
She has been through so many tests in her short life, misdiagnoses and is now thought to have a motility disorder. Will it ever end????

Thanks for sharing your story. I am sure there are many others out there who see themselves in your blog.

Digestive Motility said...

Hi Wendy,

In March, you were kind enough to respond to my first blog. I e-mailed you a response, but was uncertain if you ever received it.

I just wanted to inquire how your granddaughter is doing? I would love to hear an update.

Please let me know if there is anything that I can do to help on behalf of the Association of Gastrointestinal Motility Disorders.

Once again I would like to thank you for your kindness in responding to my blog. Your encouragement is greatly appreciated.