Staci’s Personal Story: Living with SMAS
In 2011 when I was 49, I decided to improve my health and train for a 5K. The motivation was turning 50 and having a son in Afghanistan who’s unit was encouraging the family to log miles as a way to engage with the troops daily movements. I began losing weight, a lot of weight. Without even trying. My weight dropped from over 180# to below 120# and I was having pain when I ate. A visit to my primary care doctor followed by a CTA revealed gallstones and I had my gallbladder removed. At my follow-up, I was not feeling any better. The pain remained in my abdomen, just below my ribs, almost in the middle of my abdomen. Thus began the litany of tests- CTAs, UGI, endoscopy, colonoscopy, MRI, gynecologist, visits to multiple medical facilities- University Hospitals, Large Clinics, but no answers. Finally the US tech at my Primary Care Doctor’s office had done enough research to come up with a possible diagnosis- Superior Mesenteric Artery Syndrome. One more CTA to confirm the diagnosis, although the radiologist didn’t look for it at first, and a second read was required to get the diagnosis.
Once you have a diagnosis, the journey is just beginning. Gaslighting is common for patients in the rare disease community. I took off with my CTA to the Clinic where they dismissed my diagnosis, along with two large University Medical Centers. SMAS is a diagnosis of exclusion, although you start with a gold standard test, and confirm with symptoms and rule in or out any other possibilities. At the time there was one surgeon in the US who was knowledgeable about SMAS, and I was fortunate to get to see him, get a confirmed diagnosis, and life-saving surgery. After living through that experience, and watching others go through the same experience as myself, Tara Williams and I founded the Superior Mesenteric Artery Syndrome Research Awareness and Support 501(c)3 in 2016 as a way to advocate for people diagnosed with SMAS and educate physicians who interact with them.