A Journey of Resilience: Overcoming a Rare Disease

In my early adolescence, life took an unexpected turn. It all began in middle school when my mom invited my best friend and me to Burger King. Normally, I would've jumped at the chance, but that day, I replied, "I'm not really that hungry." This unusual response was the first sign to my mother that something was amiss.

As weeks passed, I returned home from school with untouched lunches and a complete loss of appetite. My health deteriorated rapidly. My pediatrician attributed it to depression, but my mom knew better. She took me to her trusted family doctor, Dr. Feldman, who had known me since birth. Dr. Feldman conducted a battery of tests, given my history of Juvenile Rheumatoid Arthritis (JRA), which could lead to various autoimmune diseases like Crohn's.

Days turned into weeks as I visited doctor after doctor, each unable to provide answers. The tests yielded negative results, and despite their optimism in ruling out diseases, I felt nothing but despair. All I wanted was to regain my health and return to school with my friends.

My condition worsened, marked by chronic stomach pains that made eating nearly impossible. I survived on milkshakes and smoothies, shedding a significant amount of weight. Emergency room visits became commonplace, with no resolutions other than IV fluids. I recall one incident when I was in the ER and the staff ripped out my IV for discharge. As I left walking down the hall, blood started pouring down my arm my mother screamed for help. Finally, a kind man came up to me, sat me down and helped clean me up and put a bandage on me. This is one memory that I will never forget.

Months passed, and I started eating solids again, only to vomit immediately after every meal. I underwent colonoscopies and endoscopies multiple times, hoping for answers. I remember after the second colonoscopy/endoscopy I woke up early from the anesthesia because I heard the doctor say:

“The good news is that we found out she is severely lactose intolerant, and the bad news is we did not find anything else wrong.”

Migraines joined the list of my ailments, prompting a visit to a neurologist who ruled out psychological causes. He recommended physical therapy to regain lost muscle mass due to my prolonged illness.

Despite this daily struggle of doctor's appointments, surgeries, and tests, I returned to school gradually, balancing classes with homeschooling sessions. It wasn't easy to maintain friendships while my presence at school remained sporadic, and many questioned who I was.

As time passed, I adapted to my circumstances, enduring daily vomiting spells and enduring countless tests. It took four years and an unwavering GI doctor at CHOP to finally diagnose me with rumination disorder. A psychologist taught me breathing techniques to control post-meal vomiting.

High school marked my return to full-time education, and I finally felt like I had a normal life again. This journey has shaped me into the resilient person I am today, capable of conquering any challenge that comes my way.