source: The Mighty
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. In the past five years, I launched the Short Bowel Syndrome Foundation, a non-profit from the ground floor to support that patient base. Since then, I have attended different digestive disease and GI rare disease conferences. When I explain I am an advocate for SBS research and awareness and an SBS patient, they became receptive to me and my foundation’s mission. Because it is still a rare condition, there are not many experts. Most clinical experts are seasoned physicians and surgeons, but not all. There are also patients like myself at these conferences, who live and breathe SBS every day. The learning opportunities are endless.