Katie P.'s Story

I was diagnosed with Superior Mesenteric Artery Syndrome (SMAS) in March of 2025, at 26 years old, and I live in the United States. Before my diagnosis, I had never heard of SMAS, and like many patients with rare diseases, my journey to answers was long, confusing, and overwhelming. What began as persistent symptoms slowly turned into a life-altering diagnosis that changed everything I thought my future would look like.

SMAS is a condition that affects my ability to eat and digest food, and over time, it has taken away something most people never think twice about — the ability to eat or drink normally. Since my diagnosis, I have tried multiple treatment options in hopes of finding relief. I have undergone GJ tube feedings, NJ tube placements, and an Axios stent placement, all with the goal of maintaining nutrition and improving my quality of life. Despite these efforts, none provided a

lasting solution. Today, I am fully dependent on Total Parenteral Nutrition (TPN) to survive.

Relying on TPN has been one of the most difficult parts of my journey. I am unable to eat or drink anything orally, and while TPN provides life-sustaining nutrition, it comes with significant physical and emotional challenges. Being connected to an IV for hours each day is mentally exhausting and emotionally draining. It is a constant reminder that my body cannot do what it is supposed to do on its own. Additionally, being on TPN has led to frequent inpatient hospital stays due to infections and complications, requiring multiple central line replacements. Each hospital admission takes a toll — physically, mentally, and emotionally — and yet it has become a recurring part of my life.

Living with SMAS affects every aspect of my daily routine. My days are structured around medical equipment, infusion schedules, appointments, and managing symptoms. Things that once felt simple — going out to eat with friends, traveling, or even being spontaneous — now require careful planning or are no longer possible at all. At 26, it is incredibly difficult to grieve the life I thought I would have while trying to adapt to the one I am living now. Chronic illness does not just affect the body; it impacts identity, independence, mental health, and relationships.

In addition to SMAS, I have also been diagnosed with gastroparesis and Median Arcuate Ligament Syndrome (MALS), which further complicate my condition and limit treatment options. Managing multiple rare and complex diagnoses at the same time has been overwhelming and isolating. There are days filled with fear, frustration, and uncertainty, but there are also moments of resilience I never knew I had.

I am currently preparing for the Alvear procedure, holding onto hope that it may offer improvement and a chance at a better quality of life. Hope is something SMAS patients learn to hold carefully — not because we lack it, but because our journeys are often filled with setbacks, delays, and unanswered questions. Still, hope is what keeps me moving forward.

One of the most painful and unexpected parts of my SMAS journey has been the loss of friendships. When I became sick, many people I thought would be there for me disappeared. Chronic illness can be uncomfortable for others to witness, and sometimes silence replaces support. However, in the midst of that loss, I gained something incredibly meaningful. I have an amazing friend who has stood by me through hospitalizations, emotional breakdowns, and the uncertainty of living with a rare disease. Her support has been unwavering, and I truly could not get through this without her. She reminds me that even when so much is taken away, genuine compassion still exists.

On SMAS Awareness Day, I share my story not for sympathy, but for understanding. SMAS is real. It is debilitating. It is life-altering. Patients with SMAS often endure years of misdiagnosis, invasive treatments, and profound loss before receiving answers. Increased awareness leads to earlier diagnosis, better research, improved treatment options, and, most importantly, validation for those suffering in silence.

To anyone living with SMAS or any rare disease: you are not weak, you are not exaggerating, and you are not alone. Your experience is real, and your strength is seen. And to those learning about SMAS for the first time today, thank you for taking the time to listen. Awareness matters more than you know.