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/
Andrew Jablonski: The Mighty Contributing Partner "Even though my house looked like an infusion pharmacy at times, Max never batted an eye." Read more at link below or click here: Read Full Story https://themighty.com/2017/05/child-seeing-past-illness/
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 Jacob Durn Throughout life’s miseries, accidents, awkward moments, mistakes and nearly all social situations, I have the burning desire to scream this into the faces of all those around me: Why do I have to live like this? Read More
By Kalie Menge Almost every day now, I convince myself recovery is a pipe dream. I see where I’ve been, I see where I am and I see how many millions of miles away recovery is. I know it’s not getting any closer. I’m not getting any better. I’m getting worse, and I’ve been getting [...]
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 [...]
Andy Jablonski My name is Andrew Jablonski, and I am just an ordinary medical professional and advocate in the Short Bowel Industry, but with the help of my friends and family, I seek out others like myself, to help make a difference in the world of digestive diseases such as Short Bowel Syndrome. I am [...]
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 [...]
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 [...]
