Alana was born on April 22, 2011 with several medical obstacles to overcome, in addition to her Short Bowel Syndrome, caused by Necrotizing Enterocolitis (NEC). Alana lived with a central line until January 2012, but still receives regular GI feedings through a G-Tube. Alana’s family went through a very emotional and financially draining experience, juggling [...]
Twenty-Three years ago Swapna Kakani and her parents did not know her fate as a newly diagnosed newborn with Short Bowel Syndrome. Today, after 40 surgical procedures later, and waiting on a list for an intestinal transplant, they still don’t know what the future holds. Though Swapna has always had a positive outlook on life, [...]
Braden is a 16 year old young man who lives in the Boulder, CO area. Braden is Dependent on Enteral Nutrition as a sole source of nutrition as he can not absorb everything just through eating oral foods. He had to discontinue TPN because of loss of venous access at an early age, but due [...]
Recently I was featured in my local newspaper: The Lincoln Journal Star. Every year they have a sub-section of the newspaper called "Heartland Hero's". People who have or are making a difference in the Nebraska community. This year I was chosen as one of eight for this honor. The paper came out and did a [...]
Today’s healthcare consumers are increasingly asked to take a more participatory role in their care. For many this is a daunting task, even if the patient relishes the role. There are a myriad of issues undermining patient-physician communication – such as time constraints, lack of comfort with the subject matter, lack of shared language, or even fear [...]
How can one have an illness and live a healthy life at the same time? We “positively manage”, that sounds like a double standard, but in all reality, even when you are sick, life continues on. We still have everyday activities to complete, such as household chores, errands, sporting events, family events, socialization, the list [...]
How often do we hear the term “You just don’t get it” or “You just don’t understand”? A statement expressed or unexpressed sums up a frustrating verbal communication. The goal in communication between yourself and others is that you want the other person to understand what you are trying to explain. Feeling that you are [...]
I am 26 years old and have lived with short bowel syndrome, a rare intestinal disorder, and my entire life. When it comes to this disease, I’m’ an expert by experience. Short Bowel Syndrome is a rare disorder that affects about 15,000 to 30,000 people in the US. SBS is the result of a congenital defect [...]
Andrew Voss: Age 10 Hi, I am Andrew Voss. As I write this, I am a happy, and a somewhat active 10 year-old boy with short bowel syndrome. Here’s how it all started… In 2001, I was born with volvulus, or twisted intestines as my doctor explained. Due to the lack of blood flow [...]
Albert Rigau: Barcelona, Spain Albert was born the 12th March 2009. Before that day I had been resting in bed because the bag was broken. He was born apparently healthy but six days later they diagnosed him with Enterocolitis and after spending two days with an abdominal zipper they decided to go for surgery. The [...]
This was an article written by Mizzou Weekly in 1987. At the time my family still lived in Columbia, Missouri due to my short bowel syndrome care. I was chosen as the promotional child of the year for the telethon. Telethon helps miracle baby May 15, 1986: Columbia, Missouri-Mizzou Weekly Mizzou staff member Leo Jablonski [...]
When I was 18 weeks pregnant we found out our soon to be born baby girl had Gastroschisis. Gastroschisis is a birth defect where a hole is in the abdominal wall and the intestines are on the outside of the body. During my doctor visits twice a week, we saw that her intestines were getting [...]
Story coming soon!
Featured Child of the Month: Ellie Borgan Ellie lives in the Boston area with her mother and father, Abby and Gib Borgan. Ellie was born in 2006, missing 90% of her small bowel and 30% of her colon due to Jejunal Atrisia. Ellie is diagnosed as having Short Bowel Syndrome. Ellie has had multiple surgeries [...]
