Patient Worthy

3 hours ago

During Rare Disease Month, Patient Worthy is honored to share a story from Narah @we.are.rare.2023 who has been diagnosed with Fabry Disease.
“I am Narah, originally from Brazil and living in Florida for the past 17 years. I was diagnosed with Fabry disease after living with symptoms since childhood. For years, my symptoms were misunderstood or overlooked. As my primary doctor once told me, “we are looking for rice and beans...and you are a zebra.” That moment captured the reality of living with a rare disease. When your condition doesn’t fit the usual pattern, it often takes much longer to be seen, heard, and diagnosed. Today, I use my voice to raise awareness about Fabry disease and the importance of recognizing rare diseases earlier because rare should never mean invisible.”
#RareDiseaseMonth #RareDisease #RareButNotAlone #WeCareAboutRare #ShareYourStripes #ShareYourStory #PatientWorthy #FabryDisease ... See MoreSee Less

Patient Worthy

1 day ago

Meet Amber! She was diagnosed with Granulomatosis with Polyangiitis (GPA) in 2017. Through traditional medicine, holistic care, and fierce self-advocacy, Amber is now in remission! She shares her story to educate medical professionals and empower others living with GPA. For Rare Disease Month, her message is clear: we are not alone. Together we share our stories and learn from each other, and knowledge is power! Thanks Honey I Roam for sharing your story with us!

#granulomatosiswithpolyangitis #Wegeners #rarediseasemonth #RareDisease #rarebutnotalone #WeCareAboutRare #SHAREYOURSTRIPES #shareyourstory #PatientWorthy ... See MoreSee Less