Emma Tran
17 years old. I was 17 years old when my entire world got flipped upside down.
My name is Emma Tran and I am a neurological Wilson disease patient. My first symptoms included tremors, extreme hair loss, and drooling.
I was taking AP Chemistry, AP Calculus BC, AP Environmental Science, applying to colleges, prepping for the SATs, completing DNA research for Cal State East Bay, shadowing a physician, volunteering at a senior center, and was a part of a student panel for Stanford’s Asian Liver center, all while I was slowly deteriorating.
Talk about overachiever am I right?
My symptoms started to worsen to the point where I couldn’t hide them anymore. My speech began to slur, I couldn’t close or open containers properly without assistance, and my handwriting became illegible.
My parents rushed me from doctor to doctor, and they all chalked it up to anxiety and depression. For this, I was put on antidepressants and told to take a few days off of school. Little did I know, that “a few days” would lead to 2 years.
When I was finally properly diagnosed, on October 17th, 2022, via Zoom, my pediatric neurologist made it seem like it was a minor illness. This is why I am sharing my story because even experts in the field don’t have the slightest clue what this disease entails.
January 2023 was when I was at my lowest point: I couldn’t move at all (paralyzed essentially), couldn’t talk at all, couldn’t relieve my bladder without a catheter, choking on my saliva, and unable to even be transferred to the shower. On top of all this, believe it or not, students at my high school, people I considered close friends, were bullying me for having a disease that I had no control in getting.
Because I couldn’t talk at all, I remember vividly, needing to type out on my notes app for my mom to read “I would rather be dead than continue living like this.”
I persevered, through the pain, and the ridicule from students back at school. I took a gap year after graduating high school with a 4.65 GPA and highest honors (I received my diploma in a wheelchair). I am now an incoming freshman at UC Irvine in Biology, hoping to do something in advocacy and medical research to give back to the medical community and spread awareness about the disease that derailed my life for 2 years.
If you are currently going through treatment for Wilson disease, just know that it does get better.
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When you give, you’re not just supporting an organization—you’re joining a powerful movement to change the future of Wilson disease. You’ll stay informed about the latest in research and treatment, gain access to exclusive webinars and educational resources, and remain connected to a global community that understands. For more than 40 years, our shared commitment has fueled advances in care, deepened understanding, and amplified the voices of those affected by Wilson disease. Together, we’re building a stronger, more informed future.
WILSON DISEASE ASSOCIATION
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- Toll Free: 866-961-0533
- Phone: 414-961-0533
Email: info@wilsonsdisease.org
