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Tessa’s Journey with Acromegaly
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Meet Tessa, who was diagnosed with Acromegaly in 2015. In honor of Rare Disease Month, Tessa shares her experiences living with a rare disease that isn’t visible to others. Her message is one of resilience, self-acceptance, and community. “You are RARE. You MATTER. You are a WARRIOR.” Please read Tessa's full story here: bit.ly/4arl3WI
Share your rare disease journey with us here: bit.ly/4dV7gru
# Acromegaly #RareButNotAlone #RareDiseaseWeek #PatientWorthy
During Rare Disease Month, Patient Worthy is honored to share a story from Mary, who has been diagnosed with Granulomatosis with polyangiitis (GPA), formerly known as Wegener's disease.
"My name is Mary, and I am 71 years young. I am a wife, mother, and grandma. After working as an LVN/Nurse for 43 years, I retired. I love family time, cooking, gardening, and stained glass. My autoimmune disease started probably long before being diagnosed on April 4, 2022. I was in the hospital again, this time for kidney failure, and my kidney biopsy came back positive for Wegener's disease (GPA)–vasculitis. It has involved my kidneys, heart, lungs, eyes, and hearing. After two years of treatments and Peritoneal Dialysis (PD), I was blessed with healing. I healed enough to be able to stop dialysis. Many symptoms of the disease continue, so I continue to do oral treatments for immune therapy as recommended for me. Empower yourselves. Ask questions, be strong, and fight for your cure in your autoimmune disease."
#RareDiseaseMonth #RareDisease #RareButNotAlone #WeCareAboutRare #ShareYourStripes #ShareYourStory #PatientWorthy #Wegenersdisease #vasculitis #GPA
During Rare Disease Month, Patient Worthy is honored to share Gabby's story. Gabby's Wonderful World
Gabby is a 33-year-old school psychologist from Wading River, NY whose life is rooted in purpose, perseverance, and heart. She loves summer days at the beach and finds her greatest joy in her mini goldendoodle, Bella Grace, who is truly her whole world. Diagnosed with Neutral Lipid Storage Disease, an ultra-rare genetic disease, at 16 after a decade of misdiagnosis, Gabby began developing symptoms at 20—first in her arms, then her legs—leading to significant physical weakness that impacts her daily life. Walking and moving have become extremely difficult. Still, she refuses to be defined by her diagnosis. Every day, Gabby rises with intention, powering through long workdays, intensive therapies including PT, OT, and strength training, and leading Gabby’s Wonderful World Nonprofit Foundation. Her strength is not measured by what her body can do, but by the resilience, compassion, and purpose she brings into the world.
What Rare Disease Month Means to Gabby:
"Rare Disease Month is about visibility, advocacy, and hope. It is a reminder that even in the face of uncertainty and challenge, our lives carry immense value—and when we share our stories, we turn struggle into strength and isolation into community."
#RareDiseaseMonth #RareDisease #RareButNotAlone #WeCareAboutRare #ShareYourStripes #ShareYourStory #PatientWorthy #NeutralLipidStorageDisease
