Digestive Health Monthly - February 2019
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Greetings!
Everyday life can be a challenge with a rare digestive disorder. Juggling care-related tasks alongside daily activities such as work, school, and social engagements can place a strain on patients and families, limiting their ability to do the things they most want to do. For example, a
Europe-wide survey found that 70% of patients and caregivers describe arranging care as "time-consuming."
To help shed a light on the daily challenges faced by those affected and connect the medical, social, and emotional needs of those living with a rare digestive disorder, we're exploring ways we can "Bridge Health and Social Care" - the theme for Rare Disease Day 2019.
Check out the stories below and join us on February 28th in raising awareness!
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Nutrition, Hydration, and SBS
Join the conversation on Feb. 26
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Many of the nearly 7,000 rare diseases identified affect the functioning of the digestive tract. One of these is short bowel syndrome (SBS). The second Twitter chat of our 2019 Diet & Digestive Health (#DDHChat) series, this month we'll be talking to Stanford Health GI dietitian, Neha Shah, MPH, RD, CNSC, about how to maximize nutrition and hydration with SBS.
Join us Tuesday, February 26 at 12:00 PM EST with the hashtag
#DDHChat.
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Sponsored by the National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health (NIH), Rare Disease Day at NIH brings together rare disease communities across the US to raise awareness about rare diseases, the people they affect, and the NIH.
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Mahsuda's Story
How achalasia helped her write her first novel
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I didn't realize it at the time, but when I was writing about Ravine having chronic pain, I was also writing about myself having achalasia."
Mahsuda talks about how her painful journey with a rare invisible illness gave her the insights she was seeking to better understand a key character in her novel and herself.
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What's WMC?
Dr. Lee describes a new method for diagnosing gastroparesis
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Gastric emptying scintigraphy (GES) is the most commonly ordered motility test to diagnose gastroparesis. However, this test may be limited by lack of standardization across centers as well as exposure to radiation.
Michigan Medicine researcher, Allen Andy Lee, MD, describes a recent multicenter research study examining an alternative method of diagnosis: Wireless motility capsule (WMC).
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For those living with a rare disease, it can sometimes feel like you're the only one. But, having a rare disease isn't rare at all! Over 300 million people worldwide are affected by a rare disease and many of these conditions affect the functioning of the digestive tract.
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Pain Management Best Practices
IFFGD submits comments to HHS regarding draft report
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Clinical trials and research studies are important to improving our understanding of the underlying mechanisms of diseases and developing new and better treatments. By participating in a study, you can help advance research and learn more about your condition.
Here are 3 studies currently recruiting participants:
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Children ages 7-17 years diagnosed with IBS with constipation or functional constipation are being recruited to take part in a safety and efficacy study of a range of linaclotide doses.
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This online survey intends to compile written reports of IBS episodes and help the researchers gain a better understanding of the symptoms and experiences people have during an IBS episode.
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The onset of certain GI disorders can be triggered by conditions experienced by deployed military personnel in the Gulf War Theater of Operations. The War Related Illness and Injury Study Center (WRIISC) regularly conducts research into these illnesses.
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IFFGD is a nonprofit organization. We rely on donor support to fund research and to provide reliable information and support to those affected by chronic gastrointestinal disorders.
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IFFGD | 414-964-1799 | iffgd@iffgd.org | www.iffgd.org
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