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June 2019 Diet & Digestive Health Twitter Chat Recap

Eating with Scleroderma

June 19, 2019 BY HAYLEY MCCORKLE

Scleroderma refers to a group of rare diseases that involve the hardening of the skin and connective tissue. About one-third of people with scleroderma have a type called systemic sclerosis (SSc). For Approximately 90-95% of people with SSc, the gastrointestinal tract is affected. In recognition of Scleroderma Awareness Month, IFFGD and Scleroderma Foundation co-sponsored a Twitter chat featuring Neha Shah, MPH, RD, CNSC, CHES from Standford Health as lead host and Dr. Lesley Ann Saketkoo of Tulane University.

Get a recap of the chat.  [...]

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April 2019 Diet & Digestive Health Twitter Chat Recap

Eating for IBS

April 25, 2019 BY TEGAN GAETANO

Irritable bowel syndrome, or IBS, is one of the most prevalent digestive conditions, affecting an estimated 10-15% of the population worldwide. First designated by IFFGD in 1997, IBS Awareness Month is now nationally recognized to raise awareness of this commong, but often misunderstood, condition. In recognition of this awareness event, we were joined by GI dietitian and author, Kate Scarlata, RDN, and IBS advocate and blogger, Amber, for a Twitter chat on Eating for IBS.

Get a recap of the chat.  [...]

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March 2019 Diet & Digestive Health Twitter Chat Recap

Nutrition, Hydration, and Short Bowel Syndrome (SBS)

February 26, 2019 BY TEGAN GAETANO

Many of the nearly 7,000 rare diseases identified by the National Institutes of Health (NIH) affect the functioning of the digestive tract. One of these conditions is short bowel syndrome (SBS). In recognition of Rare Disease Day and the millions of people affected by a rare digestive disease, Stanford Health Care GI dietitian, Neha Shah, MPH, RD, CNSC, joined us for a chat on nutrition and hydration issues in SBS.

Get a recap of the chat.  [...]

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Bringing Patients and Providers Together One Tweet at a Time: An Article for BioScience Today

March 14, 2019 BY TEGAN GAETANO

As an open forum for human interaction, social media have become the great equalizer of health information — providing a means for patients and health care providers to connect outside of the hospital or local clinic setting and learn from one another. 

In this article for BioScience Today, we talk about how the engagement-driven landscape of social media provides patients and health care providers with new opportunities to connect and learn from each other, bridging traditional divides in medicine and ultimately changing the understanding and delivery of health and health care.  

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G-POEM for Gastroparesis Twitter Chat Recap

March 11, 2019 BY TEGAN GAETANO

Gastric peroral endoscopic myotomy (G-POEM) is emerging as a treatment option for certain individuals with treatment-resistant gastroparesis. To help answer some questions about this new procedure we teamed up with G-PACT and Stanford Medicine gastroenterologist Linda Nguyen for a Twitter chat on Friday, March 8th.

Get a recap of the chat.  [...]

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February 2019 Diet & Digestive Health Twitter Chat Recap

Nutrition, Hydration, and Short Bowel Syndrome (SBS)

February 26, 2019 BY TEGAN GAETANO

Many of the nearly 7,000 rare diseases identified by the National Institutes of Health (NIH) affect the functioning of the digestive tract. One of these conditions is short bowel syndrome (SBS). In recognition of Rare Disease Day and the millions of people affected by a rare digestive disease, Stanford Health Care GI dietitian, Neha Shah, MPH, RD, CNSC, joined us for a chat on nutrition and hydration issues in SBS.

Get a recap of the chat.  [...]

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January 2019 Diet & Digestive Health Twitter Chat Recap

Diet and a Healthy New Year

January 25, 2019 BY TEGAN GAETANO

For many, a New year means a fresh start. We make resolutions for how we want to live during the next 12 months and promise to keep them. Many of these resolutions relate to our self-care. for someone with a chronic digestive disorder, self-care is especially important. Launching IFFGD's 2019 Diet & Digestive Health Twitter chat series, GI dietitian Lauren Cornell, RD, joined us and others on Twitter to share self-care tips and help us start the year out right.

Get a recap of the chat.  [...]

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Jeanetta Frye Twitter Chat for Constipation Awareness Month

Constipation Awareness Month Twitter Chat Recap

December 20, 2018 BY TEGAN GAETANO

Most people experience bouts of constipation from time to time. But, for millions of people, constipation isn't something that just goes away. But, what exactly is constipation? Is it a missed bowel movement? Two? And, how is it treated? To help answer these questions and more, University of Virginia (UVA) Health System gastroenterologist Jeanetta Frye, MD, joined us and others from the digestive health community for a Twitter chat in recognition of Constipation Awareness Month.

Get a recap of the chat.  [...]

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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.  [...]

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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.  [...]

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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.  [...]

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KatjaKovacic Twitter 

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.  [...]

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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.  [...]

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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.   [...]

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"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.   [...]

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"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.   [...]

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"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.   [...]

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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.   [...]

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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.   [...]

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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.  [...]

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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). [...]

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