Patient Writes Book About Digestive Disease Mostly Affecting Women

ALBANY, N.Y. - July 20, 2016 - PRLog -- Brooke Keefer, a long-time sufferer of sphincter of Oddi dysfunction (SOD), announced the launch of her new book, The Sphincter of Oddi Dysfunction Survival Guide. SOD is a painful and oftentimes disabling disorder of the biliary and pancreatic sphincters that is difficult to diagnose and treat and is most commonly found in women who had their gallbladders removed.

National Institutes of Health (NIH) and other studies estimated 75-98% of SOD patients were women and prevalence in the general population was 1.5%. Regardless, research, information, and awareness about SOD is scarce, especially in trying to explain why women are affected more than men.

Right upper quadrant pain under the rib is a typical SOD symptom that may radiate to the back and shoulder. Nausea, vomiting, unintended weight loss, abnormal liver function and pancreatic enzyme levels, and constipation or diarrhea are also common symptoms.

"For 13 years, I searched for a diagnosis and was routinely told my symptoms were 'all in my head', that I had anorexia, or were caused by post-partum disorder," said Ms. Keefer. "Many patients are experiencing the same thing." Ms. Keefer said that for a long time she managed her symptoms with natural remedies. Eventually, though, her symptoms became disabling. She required a feeding tube and spent over 100 days in the hospital in one year.

In 2011, when a local surgeon suggested the author's symptoms were likely caused by SOD, Ms. Keefer rejoiced about finally having a proper name for her disabling symptoms. However, she faced resistance from local gastroenterology doctors, who insisted she did not have the disease due to fairly normal diagnostic test results.

Eventually, Ms. Keefer traveled to the University of Minnesota to get diagnosed. Later, an Albany-based surgeon performed major surgery to permanently open the sphincters. She is doing well today and founded The Sphincter of Oddi Dysfunction Awareness and Education Network, a 501c3 not-for-profit organization, and manages its website at www.sodae.org. She receives emails weekly from patients struggling to find a doctor, access treatment, and be taken seriously.

"I started writing on what I learned about SOD through extensive research, from other SOD patients, and my own personal experience," said Ms. Keefer. "Before I knew it, I had written a book. In my opinion, SOD is under-recognized and many patients are suffering needlessly."

This groundbreaking book contains information about SOD anatomy, causes/triggers of SOD, finding an SOD doctor, diagnostic tests, and becoming an empowered patient. The author also tackles the issue of patient mistreatment and how a faction of researchers want to do away with the diagnosis altogether, based on, what she says, was a poorly conducted NIH study.

"An all-male group of gastroenterologists have decided a predominantly female disease should be discarded, which some doctors have used as a green light to abandon and misdiagnose patients," Ms. Keefer said. "SOD patients must be included in the discussion about their health and future. We need to adopt a Nothing About Us Without Us stance as patients."

For more information about this book, go to http://www.sodae.org/sod-book.html.