I spent almost all of my time researching, trying to understand and figure out what was going on when it was clear the doctors weren’t going to be able to. I taught myself how to interpret labs, read X-rays & brain scans, and connected with researchers in the U.S. and other countries until finally, going into my fifth year of being undiagnosed, I gave it one last shot. I researched a bunch and asked for what I declared would be my final test. Mentally, physically & emotionally – I was beyond exhausted. I didn’t know where else to turn. I said to myself, and to my parents, if this isn’t it, then I’m done.  This one test ended up not only being positive for 1 rare disease, but 3. We found that I had gastroparesis (also known as a paralyzed stomach) along with chronic intestinal pseudo-obstruction disorder and intestinal dysmotility (both are conditions that refer to paralysis of the intestines). A few weeks after being diagnosed, I began choking on food and we found that my esophagus had also become paralyzed. This meant that whatever I had going on — whatever it was — it was spreading and spreading fast. It was at this time, when I was so sick and frail, weighing in at only 94lbs, unable to take in any regular food and very little water, that I genuinely thought I might die. It was then very clear that I had to do the thing I never imagined I would have to do: get my first feeding tube in order to survive.

A week later, I was seeing top specialists who, upon reviewing past tests, found that I had significant heavy metal poisoning during the time I was living in my dorm in college, where we think I was exposed. We have come to believe that to be a primary trigger for how this may have all started. They also tested and diagnosed me with multiple types of dysautonomia (an umbrella term for a group of conditions that means your autonomic nervous system – aka the system that controls all your automatic body functions – doesn’t work properly), along with one rare neuro condition they couldn’t figure out but urgently expressed needed steroids or chemo – stat – like “yesterday”. It felt like it was a race against the clock – except there was no actual idea of how much time we had – or if any – to really figure it out. Terrified. Overwhelmed. Scared. Sad. Hopeless. All would be considered an understatement.