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Jeffrey Roberts

Why was it so important for me to attend Digestive Disease Week?

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Jeffrey Roberts

Why was it so important for me to attend Digestive Disease Week?

by Jeffrey Roberts MS, BSc, Founder IBS Patient Support Group

May 17, 2019

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Around the age of 16 my quality of life wasn’t great - I was dealing with abdominal pain and a combination of diarrhea and constipation. In school, I often had to leave class to go to the bathroom. I wasn’t able to participate in activities with my friends because I really didn’t feel well.

Diagnosing my Irritable Bowel Syndrome (IBS) began by being shuffled through a series of doctors to pinpoint the cause of my pain. Doctors use a process of exclusion to diagnose IBS. Meaning, once other illnesses are eliminated you are left with a diagnosis of IBS. Doctors assessed my symptoms with tests, including a barium enema and lactose intolerance testing, to determine what was wrong.

Both my family physician and a gastroenterologist suggested that I had a nervous, sensitive stomach. They told me they believed that my symptoms were likely related to stress. “You need to relax because it’s in your head”, they said. Immediately, I thought I was just a nervous kid who was bringing all this pain on myself. But, my pain continued. I insisted on being referred to more doctors in order to get to the bottom of it.

Nonetheless, I kept receiving the same diagnosis. It wasn’t until my early 20’s that I really accepted IBS as being the right diagnosis. I began to take charge of my own life and find something that would help with the symptoms. Gastroenterologists told me to increase the amount of fiber that I ate, 20 grams daily, and to take antispasmodics and tranquilizers to reduce the abdominal pain. Nothing really helped in any measurable way, and I felt bloated and tired from the medication. I was determined to find a cure or a better treatment.

When I was in college, I studied computer science and math, with a generous helping of biology and health science courses.  Because of this, I knew my way around the medical library and so I began to spend time finding researchers who were doing current research about IBS. My brother was training to be a family doctor and was doing a rotation in a large hospital. He told me that visiting doctors do “Grand Rounds” to present their research to doctors. He let me know about a particular doctor, Dr. Douglas Drossman from the University of North Carolina at Chapel Hill, a top IBS researcher,  was going to be talking about IBS treatments, so I decided to attend the lecture. After the lecture, I introduced myself, as a patient, to Dr. Drossman, and explained that I was planning to use the Internet to share the information that he had presented with other patients. He was interested and asked that I keep in touch.

This was 1995, and the Internet was in its infancy. Later that year, I was able to launch the first website for patients with IBS, called IBS Group. This later developed into my current website and community IBS Patient Support Group, ibspatient.org. I deciphered the medical and research jargon and presented it to patients through my website. After my website was launched, I continued to gather information from various local events and started attending some medical symposiums. This is where I learned about the event known as Digestive Disease Week (DDW). I decided to register as an attendee and go on my own. My first DDW was in 2001.

DDW, one of the top 50 medical meetings in the world, is the largest gathering of researchers and industry leaders in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery.

While DDW had been established in 1969, it’s unlikely that it was meant for patient attendees like me. The lectures were geared towards researchers and doctors on a much grander scale. Other attendees would ask me, “Where is your medical practice?”, “What is your specialty?” I would explain that I was a patient who had IBS and that I was discovering the latest research and treatment options so that I could share the information with others. Puzzled stares were what I received from the attendees. When I wandered the exhibit hall and visited the various booths, I received the same puzzled looks. So, I decided to try another approach and simply said that I was a doctor and specialized in IBS. This seemed to satisfy everyone.

After a few years of attending DDW, I had grown my website community to 15,000 patients and gained recognition as a patient advocate. I started attracting the attention of medical organizations, pharmaceuticals and regulatory leaders. Outside of DDW, I was being contacted by researchers and patients worldwide to better understand treatment options. I was speaking with the pharmaceutical  industry and I became involved in improving communication with patients. I testified at the Food and Drug Administration (FDA) several times on behalf of patients to inform various committees and FDA leaders as to the quality of life issues surrounding IBS.

The time I made the top Influencer List at DDW

I believe my patient pioneering days at DDW helped raise the profile for all digestive disease patients. In addition, I played a key role in the use of  new social technologies, like Twitter, to enable the rapid dissemination of information to all attendees. I was very proud to be listed as a top Twitter Influencer at DDW in the conference summary report posted at the end of DDW, the first year, 2012, that several of us began tweeting during sessions. The other influencers and I knew we were onto something and tweeting has now become a very popular real-time tool used during the event.

DDW is a huge undertaking for me. It takes weeks of planning to establish my schedule of presentations that I want to attend. I have groups of friends from the research and pharmaceutical industries that I look forward to seeing each year. DDW is comfortable like a home away from home. I’ve been attending this deep learning medical event for almost 20 years. It’s still very challenging to fit in everything that you want to do while attending, but I’m up for it each year so that I can share information on my IBS Patient Support Group website and represent IBS patients in a positive way.

On Digestive Disease Week’s 50th Anniversary (2019), I was proud to be a recipient of the Patient Influencer Travel Award in its inaugural year. I know I’ll be attending DDW for many years to come.


 

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