SBS Communities

/SBS Communities

Why I’m no Longer Hiding How Short Bowel Syndrome Affects My Child

  I have a wonderful group I can turn to for help, and I have a couple members I can talk to about what our lives are like. Other than this group, I hide. And here’s why. I live in a small town, and when Brady first came home from the hospital I actually got hate mail. There were people telling me I must have done something wrong while I was [...]

When You’re ‘Too Functional’ to Have Your Mental Illness Taken Seriously

I can be dying inside while going through the motions of the day. It’s not difficult for me to know how others expect me to act. Acting fine is a cognitive process. You can probably mention right now how an emotionally stable or “mentally sane” person is supposed to act. It really is simple. A generally accepted lifestyle is one where a person wakes up every day, looks presentable, takes care [...]

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 Smith: A lifelong 22 year old young adult with Short Bowel Syndrome. Aleah will be [...]

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 affected by rare diseases and the struggles they face every day. Read More

Life Hacks for Traveling with a Chronic Illness

By Cathy Pederson General Tips: Pack your regular medication in their original bottles (if flying) or your pillbox. Take a few extra pills for each medication, just in case. Be sure to fill prescriptions before you leave – don’t count on being able to get the medication when you arrive at your destination. Pack salty snacks and water bottles. Be sure that you stay hydrated! Wear loose, comfortable clothes for [...]

Do You See Me, or My Disability?

By Brooks Fitts The next time you see someone with a disability, I want you to try something revolutionary. Instead of staring at them and wondering why they walk or talk a certain way, go up to them and truly make an effort to get to know them. You might just be surprised at what you find out. Read More

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 sure this information is passed to everyone involved in your child’s education. A good way [...]

What it is like having a Child with a Rare Disease

By Michelle Haxby Rare is what comes between my daughter and the world, it limits her. Rare has flipped my world upside down and forever changed me. It keeps me on my toes, it keeps me searching for answers. Read More

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 same problem!” you have read every article ever sent to you on any condition that [...]

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 only share uplifting moments, but then I would be excluding half of our life. Read [...]

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, you promptly encouraged my son and “Come on buddy! This way! Keep going!” Read More

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 procedures. G-tube placement, endoscopy, colonoscopy, blood transfusions. Milk, bacon, bread. Zenpep, Pulmozyme, Albuterol. Just a [...]

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 in and help them find answers because of the path we took to get here". [...]

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 is highly recommended as it provides high level of peer to peer support. It is [...]

Caring for your Short Bowel Syndrome

Taken from 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 may help. Make a list of people you can rely on for various tasks or [...]

Researchers map genetic changes resulting from short bowel syndrome

Original Article published by: 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. Schall, MD, "Most studies of SBS focus on the epithelial cells that line the intestine [...]

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 the time), was a proud big sister. We felt confident, and brave with child number [...]

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 be sold or shared with any company or organization for any reason. For safe-keeping the [...]

10 Things I Want Others to Know When I’m Out With My Special Needs Family

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. Between our four children, they have diagnoses of autism, ADHD, anxiety and epilepsy. We know each [...]

In the Mind of a Parent Who’s Been Told Her Child Might Not Make It

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 told to prepare for the worse, and if their child was to make it, it [...]