Journal of Genetic Syndromes & Gene Therapy
Open Access
ISSN: ISSN: 2157-7412
ISSN: ISSN: 2157-7412
Andrew E Jablonski
Short Bowel Syndrome Foundation Inc., USA
Posters & Accepted Abstracts: J Genet Syndr Gene Ther
The National Organization of Rare Disorders states that Short Bowel Syndrome (SBS) affects males and females in equal numbers. The disorder is usually acquired during life but in rare cases may be present at birth (congenital). In adults, short bowel syndrome usually results from the surgical removal of a portion of the small intestine. Crohn�s disease is the most frequent cause of surgical removal of the small intestine in adults. In newborns, necrotizing enterocolitis is the most common cause of surgical removal of the small intestines. The exact incidence and prevalence of short bowel syndrome in the general population is unknown. Before 2010, SBS was a condition with very little support for its patient base. In 2016 the support is very strong with a large patient and family population base and has taken interest by the pharmaceutical industry that is innovating new therapies for the rare disorder. What changed? How did support go from almost nobody to a population of active 3000 members and growing? Foundation support was the answer by many different patient organizations that saw the need to support SBS as a known condition; the congenital defect causing it and how to live a better quality of life. SBS is now a very rare disorder that is known by many, but still studied by few.