Gastoparesis & Diet Twitter Chat Recap
November 28, 2018 BY TEGAN GAETANO
The treatment of gastroparesis varies from person to person but almost always includes certain dietary and lifestyle changes. But, which ones? And, where to start? To help answer these questions, Michigan Medicine GI dietitian Emily Haller, MS, RDN joined us and others in the gastroparesis community for a Twitter chat.
Get a recap of the chat and other resources. [...]
The HealthWell Foundation Launches New Fund for CSID
November 28, 2018 BY TEGAN GAETANO
For those living with congenital sucrase-isomaltase deficiency (CSID), access to needed medical therapies often comes at a high cost. To help lift some of the financial burden posed to affected individuals and their families, the HealthWell Foundation has launched a new fund that will provide up to $10,000 in copayment or premium assistance to eligible patients living with CSID.
Learn more about CSID and the fund. [...]
Q&A with Dr. Ans Pauwels, 2018 IFFGD Research Recognition Award Recipient
November 6, 2018 BY TEGAN GAETANO
Many people experience more than one gastrointestinal disorder, which can make it difficult to tease apart symptoms and figure out the best overall treatment approach. Recipient of the 2018 IFFGD Research Recognition Award in the category of Clinical Investigator, Ans Pauwels, PhD, is looking at the overlap between gastroesophageal reflux disease (GERD) and other digestive conditions, including functional dyspepsia and esopahgeal disorders such as rumination syndrome, supra-gastric belching, and extra-esophageal symptoms of reflux like chronic cough and globus.
Here, Dr. Pauwels shares a little more about her research. [...]
Q&A with Dr. Katja Kovacic, 2018 IFFGD Research Recognition Award Recipient
October 10, 2018 BY TEGAN GAETANO
Dr. Kovacic is an Assistant Professor of Pediatrics at the Medical College of Wisconsin and serves as the Director of Pediatric Gastrointestinal Motility and Cyclic Vomiting Syndrome programs within the Pediatric Neurogastroenterology, Motility, and Autonomic Disorders Program at Children's Hospital of Wisconsin. She is very active in clinical research with a focus on pediatric functional nausea and vomiting disorders.
Dr. Kovacic was a recipient of a 2018 IFFGD Research Recognition Award in the category of Pediatric Investigator. Here, Dr. Kovacic shares more about her research and what she sees as the future of the treatment of motility disorders in children. [...]
Engaging the Patient as Partner: An Article for BioScience Today
September 14, 2018 BY CECIEL ROOKER
There is growing recognition in the research community of the role of the patient as partner — not only in the outcomes of medical research, but in its practice, as well. As a meeting place for all stakeholders — investigators, drug developers and manufacturers, governmental agencies, and patients and their families — patient advocacy organizations like IFFGD are uniquely positioned to faciliate patient involvement in research.
In this article for BioScience Today, we talk about how patient advocacy organizations like IFFGD partner with patients to shape clinical development, shifting the research and drug development process from one directed by sponsors or investigators to one informed by the real-world needs of patients. [...]
Living with Gastroparesis: Everything Changes
September 6, 2018 BY TEGAN GAETANO
For those living daily with the chronic and often unpredictable symptoms of a gastrointestinal illness like gastroparesis, change can be a scary thing. But, for Certified Health Coach and IFFGD Patient Advisory Committee member, Crystal Saltrelli, change was not just something to be endured, it was to be welcomed. Here, Crystal describes her gastroparesis journey and the change that brought a new perspective and a renewed life. [...]
"Teaming Up" for Gastroparesis Patients
August 31, 2018 BY TEGAN GAETANO
Managing the day-to-day with a chronic GI motility disorder like gastroparesis takes more than just the treatments you're prescribed — it takes a community of support. That's what G-PACT is. Run by volunteers who have been touched in some way by a GI motility disorder, G-PACT offers assistance and support aimed at helping those affected by a motility disorder and their loved ones connect with others and work together to get their everyday needs met. Here, IFFGD talks with G-PACT President, Carissa Haston, about the early days of the organization and the importance of people and organizations "Teaming Up," the theme for Gastroparesis Awareness Month 2018. [...]
"We Are in This Together!" Patients Help Patients Receive Care at the University of Louisville GI Motility Clinic
August 27, 2018 BY TEGAN GAETANO
For many individuals with gastroparesis, obtaining a diagnosis and receiving knowledgeable care often means traveling great distances to the relatively few, dispersed hospitals and clinics across the country that specialize in gastroparesis and other disorders affecting gastrointestinal (GI) motility. To lessen the financial burden many patients and families face, Patrick and Jennifer Dunegan started Gastroparesis Support Services, Inc. (GSSI), a non-profit organization that provides hotel rooms, food, and local transportation for patients receiving treatment at the University of Louisville GI Motility Clinic. Here, IFFGD talks with Patrick about the organization and the critical role it plays in helping patients get the care they need. [...]
"Let Your Voice Be Heard!" Gastroparesis Advocate Shares the Importance of Finding Your Community
August 13, 2018 BY TEGAN GAETANO
For many, the journey from symptom onset to long-term symptom management is a long and winding one, taking twists and turns and flipping "normal" completely upside down. Here, IFFGD talks with gastroparesis advocate and member of the IFFGD Patient Advisory Committee, Stephanie Torres, about her journey with gastroparesis and the importance of finding your voice and your community. [...]
CELAH Celebrates 10 Years of Service to the Latino Community
August 2, 2018 BY TEGAN GAETANO
This year marks the 10th anniversary of the University of North Carolina (UNC) Center for Latino Health (CELAH). Starting out with the goal of improving the care Latino patients receive at UNC, CELAH has expanded over the last 10 years to bolster advocacy in the Latino community, conduct and support research into health issues affecting the Latino population, and train health care providers to provide care for this population. IFFGD Patient Advisory Committee member and CELAH Program Manager, Claudia Chaparro-Rojas, reflects on a decade of serving the health needs of the Latino community and how the personal experience of living with a chronic digestive condition has influenced her relationship to the community she supports. [...]
Gastroparesis Advocates Raise Their Voices for Awareness from Coast to Coast
July 13, 2018 BY TEGAN GAETANO
Gastroparesis affects up to five million people in the U.S. and is associated with debilitating and sometimes life-threatening symptoms. Yet, it remains a little-known condition for most. To raise awareness, gastroparesis advocate and IFFGD Patient Adivsory Committee member, Melissa, shares a community-driven campaign to amplify the voice of those affected during Gastroparesis Awareness Month in August by establishing awareness proclamations in cities and states across the nation. [...]
Connecting Patients with a Rare Digestive Disorder to Research and Cures: An Article for Health Europa Quarterly
June 14, 2018 BY TEGAN GAETANO
Life with a rare digestive disorder often means suffering with disabling symptoms for years before receiving the correct diagnosis and appropriate care. Patient advocacy organizations like IFFGD play a leading role in reducing this burden by connecting those affected by these conditions with the general practitioners and specialists who manage their care and the investigators whose research provides hope for better diagnostic pathways, treatments, and even cures.
In this article for Health Europa Quarterly, we talk about barriers those affected by rare digestive conditions face and how patient organizations work to break down these barriers. [...]
IBS and the Workplace: 3 Things You Can Do for a More Comfortable Working Environment
APRIL 9, 2018 BY TEGAN GAETANO
It may come as a surprise to many, since it's often regarded as a trivial condition, but irritable bowel syndrome (IBS) is one of the most prevalent and burdensome chronic conditions reported by patients. It's cited as the second leading cause of work and school absenteeism (second only to the common cold) and was found to cause those affected to restrict their personal and professional activities an average of 20 percent of the calendar year (73 days). [...]