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More Than a Diagnosis: Gabriela’s Journey With Lysinuric Protein Intolerance, Urea Cycle Disorder, and Unshakable Faith
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Happy Rare Disease Month from the Patient Worthy team! We are endlessly grateful for this incredible community, and we promise to never stop raising your voices and advocating for the change you deserve. #rarediseasemonth #rarediseaseawareness #WeCareAboutRare #rarebutnotalone #PatientWorthy
Meet Gabriela who is diagnosed with Lysinuric Protein Intolerance (LPI). Patient Worthy is honored to share her story during Rare Disease Month!
"As a little girl, I thought miracles only happened in movies. I never imagined I would live one.
For years, I struggled with extreme exhaustion, vomiting, confusion, and behavioral episodes
that were misdiagnosed. We saw multiple specialists searching for answers. In 2018, I
underwent major spinal fusion surgery for a 60° scoliosis curve, without even knowing I had an undiagnosed metabolic disorder that could have caused life-threatening complications during surgery. Looking back, I see God’s mercy covering me even before we had a diagnosis.
In April 2019, during a severe episode, one doctor decided to check my ammonia levels. There were 500. That single test saved my life.
I was diagnosed at Nicklaus Children's Hospital with Lysinuric Protein Intolerance (LPI), a rare metabolic disorder. Finally, we had answers.
Today, I’m 21 and studying Speech-Language Pathology and Communication at Nova
Southeastern University. My pain became my purpose.
My hope in sharing this is bigger than awareness. I pray that ammonia testing becomes an emergency room protocol. Not every “mental” episode is. Sometimes it’s metabolic.
You are not your diagnosis.
And miracles are real."
#RareDiseaseMonth #RareDisease #RareButNotAlone #WeCareAboutRare #ShareYourStripes #ShareYourStory #PatientWorthy #LysinuricProteinIntolerance
During Rare Disease Month, Patient Worthy is honored to share Krystle's journey! Krystle is a 33‑year‑old mother, storyteller and advocate living with myositis. This rare autoimmune disease causes her immune system to attack her muscles, which leads to inflammation, weakness and chronic fatigue.
#rarediseasemonth #raredisease #rarebutnotalone #WeCareAboutRare #SHAREYOURSTRIPES #shareyourstory #PatientWorthy #myositisawareness #autoimmunewarrior
