By Kari Olavson: Contributor to The Mighty "Being rare means that people will learn from you. It’s not all bad. Yes, being rare is difficult, but it presents us with an opportunity to educate our peers, especially when we see another family swirling around in the pool of some seizure disorder or a developmental delay, and we can reach [...]
Information taken from The Oley Foundation Website: 2017 Oley Annual Consumer/Clinician Conference It's time to start thinking about the 2017 Oley Annual Consumer & Clinician Conference! A great opportunity to network with other patients and industry providers who are in the field of Short Bowel Syndrome and Digestive Diseases. If you have never been, it [...]
Taken from www.shortbowelsupport.com Tips for caring for yourself as a caregiver When caring for someone with a chronic condition such as Short Bowel Syndrome, it’s important to maintain your own health and well-being, too. Here are some ways you can take care of yourself: Enlist the help of others Surrounding yourself with a support network [...]
Original Article published by: www.news-medical.net The research team conducted the study in zebrafish, using a validated SBS model created in the Grikscheit laboratory. This model allowed the investigators to study matched samples of small intestine from zebrafish who had bowel surgery and those who underwent "sham" or control surgery. According to first author, Kathy A. [...]
They say timing is everything, and that couldn't be more true for my daughter Logan, and her new Short Bowel Syndrome Journey. In March 10th 2016, we welcomed our second child, JJ into the world. We were elated! Not only were over the moon for our son, but our daughter Logan (2 1/2 at [...]
The Short Bowel Syndrome Foundation, Inc. Confidentiality Policy The Short Bowel Syndrome Foundation, Inc. is very protective of members’ right to privacy. All Members and patient information is held in the strictest of confidence like it is HIPPA (For information on HIPPA click here). Members names, addresses, telephone numbers and other personal information will not [...]
Authored by: Cherie Edilson: Contributor for The Mighty It’s that time of year again, full of family gatherings and festive events. For our family of four young children and two tired parents, even the smallest excursion can be difficult. Additionally, our children face extra challenges while we try to enjoy the merriment as a family. [...]
Authored by: Rachel-Danes-Panfil : Contributor for The Mighty Being a parent can be scary alone for a normal couple. Imagine you were told your infant would be born with a serious birth defect, or something happened last few weeks of the pregnancy that changed things dramatically. With Short Bowel Syndrome, at birth, parents are often [...]
Authored by: Quenby Schuyler Contributor on PTSD Trauma dragged me to the depths. A friend once said, “The scariest place I’ve ever gone is deep inside myself.” But it’s in the surfacing, the slow swim upward, that can be transformative. With each slow slog from the depths of despair to the warm shallow waters of acceptance, I [...]
Authored by: Alexandra Kaye Contributor on ehlers-danlos-syndrome We need to recognize the reality that people are in pain despite the fact that it seems like it could be worse. By downplaying somebody’s illness (“it could be worse!”) the person becomes incredibly invalidated. Even though it’s your effort to try to make them feel better about their [...]
Authored by: Erin Migdol : Editor of General Chronic Illness for The Mighty. To help ER staff better understand how to treat patients, we asked our Facebook community with invisible illness to share what they wish ER employees knew about them. Just because the cause of your symptoms may not be visible doesn’t mean you should be [...]
This is a story about one of our short gut families and their journey. This is Rachel and Aria's story! Hello my name is Rachel my daughters name is Aria she is about to be 8 months! I had a pretty normal pregnancy until my 22 week appointment. They did a full anatomy scan on [...]
Click here for original published article The progress of the global parenteral nutrition market is based on the high prevalence of chronic conditions across the globe. The rise in cancer, AIDS, diabetes, Crohn’s disease, gastro-intestinal disorders, and short bowel syndrome cases has also led a growth in the consumption of parenteral nutrition in the recent [...]
In 2017, the Short Bowel Syndrome Foundation, Inc. is introducing a new membership program. In the past we have kept in touch with most of our following, and giving out our news updates through social media, often through links on our website to redirect the person to the foundation homepage. Though! What if Facebook crashed [...]
Authored by: Alexandra Kaye: Contributor for The Mighty Everything in life is a competition now it seems. In the world of people living with illnesses (acute or chronic), well-meaning people make being sick into a competition too. Most of the time, it’s an attempt to make somebody feel better by saying, “at least it’s not [...]
Authored by: Brianne Coffey Contributor for The Mighty I found the light when I recognized the important life lessons my 2-year-old with short gut syndrome (also called short bowel syndrome) was trying to teach me. There are seven lessons I carry with me that I’d like to share with you: Read more on Brianne's Journey [...]
Authored by: Carmen Hartgerink: Contributor for The Mighty We all know that what we see on Facebook isn’t always what exactly happens in real life. Everybody posts the good stuff. They want to show off, show the progress that’s happening in their lives, and boast about the highlights of what’s happening in their life. Well, here’s the inside [...]
Authored by: Crystal Noe: Contributor to The Mighty on Short Bowel Syndrome. Brady, was born with gastroschisis and a mid-intestinal atresia, which means his intestines were outside of his body. Different parts can be out, but he had all of his bowel out, as well as his stomach. Because of this, he lost 70 percent of his bowel [...]
By Jenny Jones: Contributor: The Mighty Jenny was diagnosed with familial adenomatous polyposis at age 8, and after six years with an ileostomy now has a straight pull-through. She has a master’s degree in social work and shares on her personal blog Life’s a Polyp. “You don’t have anything wrong with you. You have no issue [...]
Dr. Donald Kirby, one of the foundation's Board of Directors and the Director of Human Nutrition at the Cleveland Clinic in Ohio, is one of the most respected physicians in the short bowel industry. The Journal of Gastroenterology and Hepatology sat down with Dr. Kirby to discuss improving the outcomes in patients with Parenteral Nutrition. [...]
