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Meet Gabriela who is diagnosed with Lysinuric Protein Intolerance (LPI). Patient Worthy is honored to share her story!
"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. They were over 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.
You are not your diagnosis.
And miracles are real."
#LysinuricProteinIntolerance #MetabolicDisorder #RareDisease #ShareYourStory #PatientWorthy
#lupus #car-T The New Yorker PresentsTalaya Reid’s teen years were marked by exhaustion, with fatigue so severe that she spent afternoons in bed. The cause of this lethargy was left undiscovered for years, until the summer of 2017, when Reid, then 21, noticed a rash on her face after a day at the beach. Her doctor dismissed it as nothing serious. But when the rash persisted she sought care from a dermatologist who raised a more ominous possibility: lupus. Blood tests confirmed the diagnosis. That was only the beginning of her journey.
After years of lupus flareups, Reid decided to try CAR-T therapy, a treatment previously reserved for certain blood cancers. CAR-T cells are a “living drug” that scientists create by extracting T cells from the patient’s immune system, genetically reprogramming them to destroy specific cells, and infusing them back into the body.
After the therapy, Reid “felt like [she] no longer had lupus.” In the two years since the procedure, her lupus has remained in remission without any drugs. Read more about how CAR-T therapy could be used to help people with autoimmune diseases:
newyorkermag.visitlink.me/8sVHNJ
ACMT Rete per la Charcot Marie ToothPer chi convive con una malattia neuromuscolare cronica, la riabilitazione non è un lusso: è l'unica "terapia" in grado di preservare l'autonomia.
Eppure, le recenti normative e la riduzione dei ricoveri dal domicilio al 5% stanno di fatto escludendo i malati cronici dai percorsi di riabilitazione intensiva.
Valentina Bazzani, giornalista che affronta quotidianamente la Charcot-Marie-Tooth sulla propria pelle, ha scritto una lucida analisi su cosa significhino questi tagli nella vita reale di un paziente. Perché dietro le percentuali e la burocrazia ci sono persone che lottano per non peggiorare.
Leggi l'articolo e unisciti alla nostra voce per difendere il diritto alla cura:
👉 www.linkedin.com/pulse/la-riabilitazione-%C3%A8-una-necessit%C3%A0-quando-i-tagli-alla-bazzani-bj... 🐧
#CMT #CharcotMarieTooth #ACMTRete #Riabilitazione #Fisioterapia #MalattieNeuromuscolari #DirittoAllaCura #SanitàPubblica #Disabilità #MalattieRare
