Featured Stories

/Featured Stories

How I Beat the Odds and Survived Septic Shock

Andrew Jablonski: The Mighty Contributing Partner June 2nd, 2017 "I never imagined I might die from my own illness and its deadly side effect. I came close to that happening." https://themighty.com/2017/06/short-bowel-syndrome-surviving-septic-shock/

Calling Parents, Children, and Teens with SBS!!!

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 [...]

Online Support Groups to Follow

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 [...]

To the College Students Who Ask If I’m OK

By Kate Rusmiselle I’m doing more than OK, because I have friends who accept me as who I am and I continue to meet people who will. A lot of people have done so with no questions asked. When friends do ask why I am the way I am, it is out of genuine curiosity [...]

I Am Not My Depression, I Am My Fight

By Liz I. I try to look at it through a logical lens. What is the science behind it? From that perspective, I would have to say it is an illness. Its cause is likely multifaceted. So my depression boils down to a list of symptoms. But does it make a difference when some of [...]

When a Woman Saw My Wheelchair and Asked ‘What Did You do to Yourself?’

By Kayla Shuch A woman who noticed I was in a wheelchair looked at my cast and asked, “What did you do to yourself?”I wanted to slap her in the face and gave a glare as to say WTF? I didn’t do anything to myself. My parents understood my reaction and explained my situation. This experience has become one of the [...]

What an Autistic Shutdown is Like for Me

Authored by: Samantha Craft In my day-to-day living, I seek out the familiar. Because the familiar doesn’t need to be analyzed. And in that there is ultimate refuge for me. Familiarity can come in multiple shapes and sizes — in a predictable routine, a familiar voice or face, a soothing melody, a favorite movie or [...]

SBSF Welcomes aboard new volunteers

2017 has started off well thus far. Why the Short Bowel Syndrome Foundation continues to work on finding funding, it will not stop us from carrying out projects that cost nothing to run. These projects can not just be ran by one person, so I want to welcome aboard the following and their roles! Aleah [...]

When Even the Doctors Haven’t Heard of Your Child’s Rare Disease

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 [...]

How Parents Can Make Inclusive Education Better for Children With Disabilities

By Samantha Milne One of the problems I faced was that many learning support assistants are used to working with students who have learning difficulties, not a physical disability. My first piece of advice to any parent is to ensure the school knows about your child’s health and disabilities and how they affect them. Make [...]

Inside the Mind of a Chronically Ill Person Debating If They Should Post on Facebook

By Jennifer Steidl At first all the people in your life are supportive, but as time goes on and you don’t get better, and you have seen this specialist, and that specialist and tried every suggestion of every caring friend from acupuncture, to massage, to “this amazing doctor that helped my friend who had the [...]

Why I Won’t Sugarcoat My Family’s Medical Challenges on Facebook

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 [...]

To the Parent Who Helped Encourage My Son With a Disability

By Stephanie Rasmon As he finished his episode of frustration and we slowly made our way to the ramp, we met you and your daughter walking down the ramp. As a bit of encouragement for my son, I pointed in your direction and said “See! That’s where we go to go play.” Without any hesitation, [...]

When They Wheel Your Child Back for Surgery

By Elise Free The anesthesiologist comes in. He asks the questions you know by heart. You run through the list of prior surgeries and procedures and sense for a moment a look of sadness in his eyes. He knows women like you. Mothers like you. They are all the same, listing like groceries, their child’s [...]

What Being Rare Means To Us

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 [...]

2017 Oley Annual Consumer/Clinician Conference

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 [...]

Caring for your Short Bowel Syndrome

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 [...]

Researchers map genetic changes resulting from short bowel syndrome

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. [...]

Meet Logan! A Short Bowel Hero!

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 [...]

SBSF Notice of Confidentiality

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 [...]