SBS Communities

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Finding Support in Online Communities

Finding Support in Online Communities By NPS Pharma, SBSF, Oley Foundation, & NORD Less than 1% of the population lives with a rare disorder. Finding support can be scarce and difficult. Though with social media, online communities have formed of patients, all supporting each other. The Short Bowel Syndrome Foundation, Oley Foundation, and National Organization of Rare Disorders speak on this topic. This educational video can be viewed through the link [...]

Time to Register for Oley 2016: Newport Beach, CA

By The Oley Foundation Newport Beach Marriott Hotel & Spa Newport Beach, California July 5-July 9, 2016 Rooms at the Newport Beach Marriott are available at $169/night for single/double, $209 for a triple, or $229 for a quad, through June 17, and will be honored three days pre and post conference, based on availability. The Marriott's destination/resort fee is waived for Oley guests. Reserve early if you are planning to [...]

To Much Social Media Can Lead to Depression

By: Kayleigh Lewis The more time young adults spend on social media, the more likely they are to become depressed, a study has found. The 1,787 US participants used social media for an average 61 minutes every day, visiting accounts 30 times per week. Of them a quarter were found to have high indicators of depression. Read this article

Foundation to soon go live with new website

LINCOLN, NE., April 7, 2016 – The Short Bowel Syndrome Foundation, Inc. is proud to announce that later this month, the foundation will be coming out with a brand new website. The website was created by FireSpring, Inc. A Non-Profit Business that supports other non-profits. The Foundation has made some major changes in design, content, search ability, updated donation and contact form, along with a new Blog and Video feature [...]

High-sugar diet is as ‘damaging to your brain as extreme stress or ABUSE

By DailyMail Sugar found to be as damaging as early life stress, scientists discover. Chronic sugar intake triggers changes to hippo-campus the area of the brain, which is important for both memory and stress.Experts say changes noted in the brain are of 'great concern' given the high consumption of sugary drinks, particularly among young people. Read this article

Why is Depression common in people with Chronic Illness?

By MedicineNet Depression is one of the most common complications of chronic illness. It is estimated that up to one-third of individuals with a serious medical condition experience symptoms of depression. Read this article

Dutch open their first ‘poop bank’ to treat gut diseases

By Yahoo Health News After blood and sperm banks, Dutch researchers have now opened the country's first "poop bank" in a rare and cutting-edge branch of medicine to treat people with chronic gut infections. Read This Article

Boston Children’s Hospital Short Bowel Syndrome Overview

Boston Children's Hospital is known for its innovation in Short Bowel Syndrome. It was where the STEP procedure was created by a team of surgeons to lengthen the small intestine. They give a solid overview of the condition. Visit their site for SBS when clicking on Read More. Read More

Relationships and living with a Chronic Illness

By Jon Fortenbury (The Atlantic) When should you disclose medical conditions to a date? Friends? When is illness too much for a relationship or friendship to survive? Read this article

Sleeping and Chronic Illness

By The pain and fatigue that people with chronic illness experience have a large impact on their daily lives, including sleep. Because of their illness, these patients often have trouble sleeping at night and are sleepy during the day. This is especially the case for people who have neurological (nervous system) diseases such as Parkinson's and Alzheimer's. Insomnia can make the person's pain and quality of life worse. In addition, some [...]

Chronic Illness & Mental Illness

By Canadian Mental Health Association Mental health and physical health are fundamentally linked. People living with a serious mental illness are at higher risk of experiencing a wide range of chronic physical conditions. Conversely, people living with chronic physical health conditions experience depression and anxiety at twice the rate of the general population. Co-existing mental and physical conditions can diminish quality of life and lead to longer illness duration and [...]

Most Expensive Medical Procedures of 2016

Article Taken from Healthcare Global Healthcare in the United States is expensive, but which medical procedures carry the costliest price tags? In a recent issue of Healthcare Global magazine, they profiled the top 10 most expensive medical procedures, below are the top six.     Liver transplant  USD $577,100 Bone marrow transplant USD $676,800 Lung transplant USD $797,200 double, USD $561,200 single Heart transplant  USD $997,000 Heart-lung transplant  USD $1,148,400 Intestine transplant USD [...]

Naia Rare Diseases Forms Scientific Advisory Board Comprised of Internationally Renowned Experts and Scientists

Naia Rare Diseases Inc, a subsidiary of Naia Limited, Forms Scientific Advisory Board Comprised of Internationally Renowned Experts and Scientists — Company Appoints Advisor of Patient and Physician Relations — RICHMOND, Calif., January 7, 2016 – Naia Limited, an international drug development company today announced that its subsidiary, Naia Rare Diseases, has formed a Scientific Advisory Board (SAB) comprised of internationally renowned experts and scientists in gastrointestinal diseases, particularly Short [...]

Cupcake Dream Motivates Doctor

Butler County boy's cupcake dream motivates doctor By Luis Fábregas | Monday, May 21, 2012, 11:47 p.m. Austin Rath is almost 6 years old and never has had a drink of water. He hasn't eaten a cupcake, either. The kindergartner from Renfrew in Butler County lost about 90 percent of his intestines shortly after birth because of an illness known as short gut, or short bowel, syndrome. For nutrition, he gets [...]

CenterWatch Weekly Article: SBSF and NPS Pharma Partner on New Project

SBS Foundation & NPS Pharmaceuticals partner to connect, and eventually recruit, patients CenterWatch Weekly, December 9, 2013 The Short Bowel Syndrome Foundation (SBSF), a nonprofit group that worked with industry leaders to support NPS Pharmaceuticals in gaining FDA approval for its drug Gattex last year, now is undertaking a new project that will be a critical resource for the SBS community and contribute to quicker development of new drugs to [...]


Joshua's still our "Little Trooper," taking one day at a time. Today he's off all enteral and IV nutrition completely! Our world as we knew it changed completely when his surgeon closed his g-button site in 2014. At nearly ten, he is still receiving nightly growth hormone injections and takes lots of supplements daily. Proper nutrition and growth are our main focuses right now. Joshua battles bacterial overgrowth on a [...]


Vinnie is doing well. After suffering his first transplant rejection January of 2015 and taking most of the year to recover from it, so far 2016 is proving to be a healthier, happier year! This year we will celebrate his 5 year transplant anniversary of receiving a small bowel! He is doing great in kindergarten, is taking piano lessons and hopes to learn karate soon! He is a very active, [...]


This past year has been great for Kyrie! The best yet. In June, Kyrie started feeding therapy and a blended bolus diet, both of which has been a great success. Kyrie now eats (tiny bits) by mouth and is handling more feed than ever! Kyrie is still on TPN 10hours a day. He was on 7 says a week but because his labs recently have looked so good, his TPN [...]


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