Living with my condition short bowel syndrome (SBS) has affected my life in many different ways over the years — physically, emotionally and socially. They all have their positives and their negatives. These experiences – both positive and negative – were the driving force in establishing the Short Bowel Syndrome Foundation. Primarily, because I have an [...]
At 30 years old, I’ve lived with short bowel syndrome (SBS), a rare intestinal disorder, for my entire life. When it comes to this disease, I’m an expert by experience. SBS is the result of a congenital defect or trauma and affects about 15,000 to 30,000 people in the US. It is a condition that reshapes the way you [...]
http://ct.counseling.org/2016/04/the-tangible-effects-of-invisible-illness/ A variety of invisible illnesses can greatly impact both the physical and mental health of individuals. Some of these illnesses are debilitating, preventing participation in the normal activities of daily living. Examples include chronic fatigue syndrome/myalgic encephalomyelitis, Ehlers–Danlos syndrome, fibromyalgia, lupus, Lyme disease, multiple sclerosis, myasthenia gravis, postural orthostatic tachycardia syndrome (POTS), regional complex pain syndrome [...]
Naia Rare Diseases Inc, a subsidiary of Naia Limited, Forms Scientific Advisory Board Comprised of Internationally Renowned Experts and Scientists — Company Appoints Advisor of Patient and Physician Relations — RICHMOND, Calif., January 7, 2016 – Naia Limited, an international drug development company today announced that its subsidiary, Naia Rare Diseases, has formed a Scientific [...]
Butler County boy's cupcake dream motivates doctor By Luis Fábregas | Monday, May 21, 2012, 11:47 p.m. Austin Rath is almost 6 years old and never has had a drink of water. He hasn't eaten a cupcake, either. The kindergartner from Renfrew in Butler County lost about 90 percent of his intestines shortly after birth because [...]
Joshua's still our "Little Trooper," taking one day at a time. Today he's off all enteral and IV nutrition completely! Our world as we knew it changed completely when his surgeon closed his g-button site in 2014. At nearly ten, he is still receiving nightly growth hormone injections and takes lots of supplements daily. Proper [...]
Vinnie is doing well. After suffering his first transplant rejection January of 2015 and taking most of the year to recover from it, so far 2016 is proving to be a healthier, happier year! This year we will celebrate his 5 year transplant anniversary of receiving a small bowel! He is doing great in kindergarten, [...]
This past year has been great for Kyrie! The best yet. In June, Kyrie started feeding therapy and a blended bolus diet, both of which has been a great success. Kyrie now eats (tiny bits) by mouth and is handling more feed than ever! Kyrie is still on TPN 10hours a day. He was on [...]
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Andrews update is that he is now 15 years old. G-tube feedings are 12 hours a day. He attends high school and is in the drum line in band. He became much more social after discontinuing feeds during school hours, & upon starting high school. Previously, enteral feeds were run 24 hours a day. Suddenly, [...]
We have some new warriors following so I wanted to update and introduce kayden. Kayden is an x 34 weeker weighing in at 4 lbs with his intestines on the outside of his body. Kayden was immediately taking to his first surgery at 3 minutes old, and we got the hardest question ever asked of us. [...]
The Voss Award (Two Tickets to the Lincoln Stars Hockey Team and Parking Pass) Hi! I am Andrew Voss. I am a happy, and active 11 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 [...]
Austin was born with less than 10% of his intestine functioning. As a result, he has Short Gut Syndrome. He is dependent on TPN for nutrition and hydration. This requires that he's is hooked up to an IV at least 17 hours a day. There are many serious medical complications associated with Short Gut [...]
Our brother Tony is 7 years old and 2 1/2 years later he has been waiting for transplant. Tony is need of a stomach & total intestinal transplant and the longer his wait he will also receive liver transplant. He was born with Total Colonic Hirschsprung's Disease. It affects his digestive tract that doesn't allow him to eat or go [...]
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 [...]
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 [...]
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 [...]
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