Where We Stand: Understanding the Celiac Disease Patient’s Wants and Needs
The National Foundation for Celiac Awareness (NFCA) held its first ever Research Summit in the spring of 2015 where we collaborated with people in many different fields and worked together to find out what people with celiac disease really need in order to live better, longer. Now, we’re bringing this conversation to you. Join in our conversation with patients and experts to learn about these needs.
Hear Erica Dermer , and Chad Shaffer, MD, FAAFP talk about their own biggest needs as people diagnosed with celiac disease and learn about how doctors think about these needs from Ciaran Kelly, MD . Most importantly, learn how better understanding these needs can help to shape the future of celiac disease research.
When: July 14, 2015
Where: Your computer
Time: 2:00 p.m. ET/11:00 a.m. PT
About the Panelists
Ciarán Kelly, MD
Dr Ciarán P Kelly, is Professor of Medicine at Harvard Medical School and Director of Gastroenterology Training at Beth Israel Deaconess Medical Center (BIDMC), Boston, Massachusetts USA. Dr. Kelly earned his medical degree from Trinity College in Dublin, Ireland where he was a Foundation Scholar and recipient of numerous academic awards. Dr Kelly has also received postgraduate clinical and research awards from the Crohn’s and Colitis Foundation of America, the American Gastroenterological Association and the National Institutes of Health. He is an American Gastroenterology Association Fellow and a Fellow of the American College of Gastroenterology.
Dr Kelly has engaged in patient care and research in Celiac disease for more than 20 years. In 2004 he was a founder of the Celiac Center at BIDMC and serves as its Director. In 2013 he co-founded the Celiac Research Program at Harvard Medical School.
Dr Kelly is an internationally recognized expert in the diagnosis and management of celiac disease and, in his clinical practice, specializes in difficult-to-treat enteropathy. He also leads research programs on the pathogenesis of celiac disease, its diagnosis and new approaches to treatment. He has served as a committee member of the NIH, Center for Scientific Review as well as FDA, CDC and NIH committees on celiac disease and C. difficile infection. Dr Kelly is the author of more than 200 clinical and basic research book chapters, invited reviews, and original research articles appearing in medical and scientific journals including Gastroenterology, Vaccine, Infection & Immunity, The Journal of Clinical Investigation, The Lancet and The New England Journal of Medicine.
Chad Shaffer, MD, FAAFP
Dr. Shaffer is a retired Family Physician. He is a graduate of the University of Missouri-Kansas City Medical School. Upon completion of residency, he practiced Family Medicine and Obstetrics with his wife Suzanne who is also a Family Physician.
He returned to his medical school after private practice to begin an academic career in Family Medicine were he served as an Assistant Professor of Medicine at the Department of Community and Family Medicine.
Dr. Shaffer practiced full scope Family Medicine including High Risk Obstetrics and Operative Obstetrics. Recognizing the huge potential of an electronic medical record, he became a champion for the EMR and developed a pivotal role in Medical Informatics. He served as the Chief Medical Information Officer for Truman Medical Centers in Kansas City where he enjoyed the challenge and success of migrating to a full electronic health record. Utilizing strategies such as Lean Six Sigma he engaged directly with other nurses, clinicians, and administrators for a transformation of the medical informatics culture within the entire organization.
About 5 years ago, Dr. Shaffer became seriously ill with a “mysterious” illness that forced him to retire from the practice of medicine. He dropped to 100 pounds, lost his ability to walk, was confined to a wheelchair, developed cardiac arrhythmias and ultimately had a cardiac arrest. And then he got his diagnosis.
Seriously? Celiac disease? Seriously.
Dr. Shaffer had a serious autoimmune disease, known as celiac disease refractory type II. He was confronted with T-cell clone cells, a precursor to lymphoma, on his intestinal biopsies. In retrospect, Dr. Shaffer had undiagnosed celiac disease almost all of his life. He is a representative poster patient for the asymptomatic, undiagnosed, long standing celiac disease patient that developed serious life threatening complications.
Embarking on the most challenging battle of his entire life and career, he has become an advocate and resource for other celiac patients and celiac disease awareness.
Dr. Shaffer now enjoys his good days when he can and gladly takes the bad days as a blessing too. His favorite saying is “Some days the Dragon wins and some days the Dragon Slayer wins”.
Although his ongoing medical condition prevents him from practicing medicine, he loves to share his experience and knowledge as a physician and patient with celiac disease.
Erica Dermer, Celiac and the Beast
Erica Dermer, founder and head celiac in charge of Celiac and the Beast, started her blog because she felt like she had a new voice to bring to the gluten-free table and needed some celiac catharsis through writing. With a background in marketing and market research and development (including the food and beverage industry), she’s always had a soft spot in her heart for packaged goods, marketing, and branding in the gluten-free food industry. It also helps that she’s a self-proclaimed terrible cook, so she relies on many gluten-free products to help her get through her day without burning down the kitchen. She uses humor to get through her diagnosis and living gluten-free in a world full of wheat.
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