Finley H.'s Story

Published: September 22nd, 2026

My name is Finley (they/them) and I’m 20 years old from California, USA. I was diagnosed in 2023 at age 16 by an out-of-state specialist, after being essentially told by a radiologist at Stanford Children’s that SMAS doesn’t exist. He did a barium swallow scan.

After that one test, I was told “based on this, you don’t need a feeding tube.” Mind you I was throwing up multiple times a day, unable to keep any food down, and had lost a significant amount of weight that I didn’t have to lose in the first place; and the entire reason I was admitted to the hospital was to have an NJ tube placed. My GI doctor had called ahead and confirmed the plan, but this was obviously not what happened.

I was eventually able to get a feeding tube, but it was an NG, not NJ, despite my GI doctor telling me NOT to get an NG as I would just vomit it up. She was right. Despite this, I was allowed to throw up multiple NG feeding tubes, having to go to the ER to get them replaced, before finally the inpatient team agreed to place an NJ. The NG tubes made me sicker, and there was a point where I was vomiting 10-15 times a day. I did end up vomiting up the NJ tube once, but overall did so much better with it. I wish they had listened and placed the tube correctly the first time.

Going back a bit…during the period of NG tubes, I realized that the team believed I had an eating disorder. I was placed in an eating disorder unit where, after a heartbreaking goodbye to my parents, who only left me there because they didn’t know what else to do, I was left alone in the dark to cry and vomit for over an hour before someone showed me to my room. They would not give me food through my tube due to the vomiting, so I was without the tiny amount of nutrition I had.

I was not allowed to go to the bathroom alone, or have my door closed, because they thought I was making myself vomit, even though if you watched me for one second it was very clear that it was completely involuntary. They gave me medication which I obviously threw up. One of the staff told me “just try to stop throwing up”. I told her I couldn’t help it. After less than 24 hours at the unit, a kind man came into my room and told me that this was not the place for me, and I needed to be in a medical hospital instead. I was so relieved that someone finally believed me, when I had been feeling like the whole world was against me and I was alone. I still had a long battle ahead of me, but that was the start of things, very slowly, beginning to get brighter.

I have since found out that I have many other conditions, including hEDS, POTS, and other vascular compression syndromes. I truly believe I wouldn’t be here today if it weren’t for Dr. James Parker, who took the time to review all my scans that we sent to him in desperation after being told there was “nothing remarkable” by other doctors. My family and I are forever grateful to him. I also want to thank my parents who took turns taking time off of work to stay with me, at home and in the hospital, when I was so sick.

Writing all of this out was very emotional and difficult for me, but if it helps even one person, it is beyond worth it. I never want anyone to suffer like I did. I still struggle daily but am doing much better than I was, and for that I am grateful.