JAN 28TH: SMAS Awareness Day 🦓🎗️💜
I am not too rare to care 🦓💜
Today is Superior Mesenteric Artery Syndrome awareness day!
SMAS is a rare vascular compression where the small intestine (specifically the duodenum) is compressed by two arteries (specifically the abdominal aorta as and the superior mesenteric artery). SMAS doesn't have one specific traceable cause, but researchers have found that it can be caused by weight loss, surgery, or it being congenital (like mine). SMAS can lead to death if it's not caught. Some of the symptoms include weight loss, food aversion or food fear, debilitating pain, malnutrition, nausea, vomiting, and more. Treatment includes maintenance via putting in a feeding tube that bypasses the compressed section, often times in attempt to gain weight to relieve the compression (which will not work as well with congenial SMAS). There are numerous surgeries to quote unquote "cure" SMAS, however many with congenital will continue to have issues later on.
My diagnosis journey:
I've had GI issues since I was young. I can remember as young as 8 having pain with eating, chronic constipation, and having issues with certain foods. It progressively got worse as I got older. At age 19, I had a doctor tell me I had an eating disorder and that I needed psychiatric help. I knew my pain was real so I kept pushing for answers. At age 20, I got a diagnosis of delayed gastric emptying/Gastroparesis, Gastritis, and GERD. I assumed it answered everything, though I still had unexplained symptoms. I finally getting a good GI doctor who believed me and my symptoms. Finally at age 21, I had a flare up where I felt like I lost control of my body. I became extremely malnourished. I went to the ER with my body eating itself, I got a CT scan with contrast that diagnosed me with SMAS. This diagnosis answered many questions I had. They placed a GJ tube in December as I can't eat or drink anything by mouth due to the debilitating pain it causes. I'm grateful I had doctors at the ER who believed me, my symptoms, in vascular compressions. I still have some unexplained symptoms, but I will continue to fight.
#smas #vascularcompression #embracevulnerability #chronicillness #ehlersdanlossyndrome
Superior Mesenteric Artery Syndrome (SMAS) is a rare but serious condition affecting the small intestine. Awareness days like January 28th are crucial as they educate people about SMAS, increasing recognition among healthcare providers and patients. Understanding that SMAS may result from significant weight loss or anatomical factors can help in early detection. Symptoms such as debilitating abdominal pain, nausea, vomiting, and weight loss can often lead to misdiagnoses, as many individuals with SMAS face skepticism when describing their experiences. The treatments for SMAS often include nutritional support through feeding tubes to manage symptoms and improve quality of life. Awareness and advocacy play significant roles in helping individuals with SMAS find the right medical support they need. Patients often share their journeys of diagnosis, revealing the struggle for acknowledgement of their symptoms, which underscores the importance of understanding rare diseases within the medical community. By sharing stories and information, we aim to create a stronger community supporting each other and encouraging research and awareness.