Dear SBSF Member, Are you a parent, child, or teen? We would like to invite you to help us support the development of a new SBS patient-reported conclusion survey for patients diagnosed with short bowel syndrome (SBS) in the pediatric ages. We encourage the parents to fill out the survey as a proxy to [...]
EVMS Magazine 2016-2017 Issue 9.4 Doug Gardener Dramatic improvement seen in patient survival in ICU; Chance discovery could transform care of sepsis and save millions of lives worldwide NORFOLK, VA (March 23, 2017) – A critical-care physician at Eastern Virginia Medical School (EVMS) believes he has found something that has eluded medicine for centuries: a [...]
61% of Americans turn to the internet for medical advice. while there is an abundance of healthcare information on the internet, many patients look for something more, such as an emotional connection. These connections are found through online support groups. In fact 1 in 5 online users have gone to the internet for support for [...]
By Mia Carella Today is Rare Disease Day. According to the National Organization for Rare Disorders, the main objective of this day is “to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives.” After reading this article, please take a minute to think about families in your life [...]
By Stephanie Rasmon I share these things because this is who we are. I can’t, nor will I, sugarcoat our lives because that is not our reality. I can’t apologize for using Facebook for its purpose of connecting to loved ones, friends, and bringing strangers together. I suppose I could not share our challenges and [...]
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 [...]
