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 [...]
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 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 [...]
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 [...]
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 [...]
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
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 [...]
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 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, [...]
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 [...]
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 [...]
