Kailyn T.'s Story

Published: September 22nd, 2026

My name is Kailyn, I was just diagnosed this year at age 23. I live in the USA and I see three different intestinal rehab/transplant teams across the USA. I also have MALS, and had surgery for it this summer. The procedure was a success, which was something prior to surgery that I was hoping would relieve some of my pain as I await the Alvear-Fowlkes procedure. I was also recently diagnosed with Nutcracker Syndrome. SMAS impacts so much of my daily life. Between SMAS, my other compressions, intestinal failure, gastroparesis, and a pancreas divisum, I am always severely nauseous or hurting. My conditions are comorbidities of Stickler Syndrome and Weissenbacher-Zweymüller Syndrome, which are hypermobility genetic conditions. I had to take a break for school. I’m working toward a psychology degree. I have also had to limit the amount of clients I take on for work. My symptoms are just too much. I take meds around the clock to manage symptoms, and I am basically a full time nurse to myself. I have a g tube for draining, a j tube for some of my meds, and a central line for TPN, fluids, and the rest of my meds. My biggest support system during this is my mom, my therapist, my team of doctors, and my friends. I’ve been blessed with amazing friends who also have these conditions or who have tubes and lines. That’s helped a lot to know I’m not alone.