Rare Disease Report
Physicians
Physicians
Patients & Caregivers

Advocacy Spotlight: Short Bowel Syndrome Foundation

AUGUST 30, 2016
RDR Staff
The Short Bowel Syndrome Foundation is dedicated to patient advocacy for those with short bowel syndrome (SBS). Their mission includes providing supportive services for patients and caregivers, as well as educational resources. Overall, the foundation wants to improve the quality of life for those with SBS.
 

What is Short Bowel Syndrome?

SBS, also know as short gut syndrome, is a malabsorption disorder caused by the surgical removal of a large portion of the small intestine, or rarely due to the complete dysfunction of a large segment of small bowel. The main symptom of short bowel syndrome is diarrhea.
 
People with short bowel syndrome cannot absorb enough water, vitamins, minerals, protein, fat, calories, and other nutrients from food. The nutrients the small intestine has trouble absorbing depends on which section of the small intestine has been damaged or removed.
 
A health care provider will recommend treatment for short bowel syndrome based on a patient's nutritional needs. Treatment may include:
 
·      nutritional support
·      medications
·      surgery
·      intestinal transplant
 

About the Short Bowel Syndrome Foundation

The Short Bowel Syndrome Foundation (SBSF) was founded by Andrew E. Jablonski who he himself is a SBS patient. The foundation was established in 2010.  SBSF has a patient-first mentality. They help make it possible for patients and their families to live fuller lives by connecting them to necessary resources, creating hope.
 
The SBSF team strives to help educate, and support patients who live with SBS. The Foundation participates in an online Family Support Group and administers an adult based support group for those who live with the disease.
 

Educating groups provided by SBSF

The groups are made up of patients and caregivers and each has its own private group. The larger group of over 800 members and is for Pediatric SBS Patients and Caregivers, and is made up of mostly parents discussing their child’s care.
 
The adult group helps teenagers, young adults to elders with SBS with support, lifestyle advice, and talk about their general health. This group can be a little more graphic, but detailed in order to help those learn and answer the questions they or others might have.
 

SBSF Getting it done

One example of how their collaborations with industry have improved care for patients with SBS is their part in the FDA approval of Gattex, the first prescription medicine for the long-term treatment of adults with Short Bowel Syndrome who are dependent on parenteral support. This was the first significant advance in SBS in about 40 years.
 
The foundation contributed to the drug approval process by contributing to market research, patient expectations and concerns, and also served as advisor on the development of website, educational content, while acting as sounding board for content and programming- kudos to SBSF to putting in the work to make a difference!
 
To learn more about the SBSF, visit their website.


Copyright © RareDR 2013-2017 Rare Disease Communications. All Rights Reserved.