Orphan Disease of HLA-B27 With Brenda From Florida

Send us Fan MailIn this episode, I sit down with Brenda, a woman navigating the challenges of a painful, disabling, and unnamed orphan disease. Despite testing negative for VEXAS, relapsing polychondritis, and MAGIC syndrome, Brenda continues to suffer from spontaneous tendon tears and systemic inflammation. One key clue? She is HLA-B27 positive, a genetic marker linked to certain autoimmune conditions — but her exact diagnosis remains elusive.  💡 In this episode, you’ll learn:What HLA-B27 is and why it matters in autoimmune diagnosisHow spontaneous tendon ruptures can signal a deeper immune issueWhat it’s like to live with a disease that has no nameWhy orphan disease patients often go years without answersHow Brenda is advocating for herself and others despite uncertaintyWhere to find support and resources for HLA-B27–associated conditionsStay Tuned for a quiz at the end of the episode.  Test Your knowledge Play with friends and compete to see who gets the most answers right.  Answers will be video only on my socials.  See below🔔 Subscribe for more interviews with patients, advocates, and experts from the rare disease community! 👍 Like, Comment, and Share to support rare voices. 📩 Text me directly with your thoughts or questions: [Insert your link here]🔗 Connect with me: 🌐 Website: rareconnection.org 📘 Facebook: [Rare Connection Facebook] 🐦 X (Twitter): [@Rare_Connection] 💼 LinkedIn: [Rare Connection Inc. or Joanna Ball] 🍳 Subscribe to my YouTube channel: [Rare Chef]⚠️ Medical Disclaimer: This podcast is for informational purposes only and should not be considered medical advice. Always consult a qualified healthcare professional before making any changes to your health or treatment plan.💙 Mental Health Resources If you're struggling, you're not alone. Help is available 24/7. 📞 In the U.S., dial 988 or text HELLO to 741741.00:00 intro02:53 Diagnosis story05:32 Early Symptoms and medications attempted08:55 Medical Gas Lighting12:10 suit of Armor13:38 PRP & Stem Cell14:05 Anti-Inflammatory diet18:37 Blood Test for HLAB2720:45 Doctors theory  (sinus infection that triggered the gene22:00 The Name doesn't matter25:50 how doctors ruled out other conditions31:32 specialists involved in care33:00 Travel For Care37:29 the little things45:44 Advice for others48:45 conclusion51:28 HLAB27 quizSupport the show