In 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 diagnosis
- How spontaneous tendon ruptures can signal a deeper immune issue
- What it’s like to live with a disease that has no name
- Why orphan disease patients often go years without answers
- How Brenda is advocating for herself and others despite uncertainty
- Where to find support and resources for HLA-B27–associated conditions
Stay 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
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🌐 Website: rareconnection.org
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⚠️ 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 intro
02:53 Diagnosis story
05:32 Early Symptoms and medications attempted
08:55 Medical Gas Lighting
12:10 suit of Armor
13:38 PRP & Stem Cell
14:05 Anti-Inflammatory diet
18:37 Blood Test for HLAB27
20:45 Doctors theory (sinus infection that triggered the gene
22:00 The Name doesn't matter
25:50 how doctors ruled out other conditions
31:32 specialists involved in care
33:00 Travel For Care
37:29 the little things
45:44 Advice for others
48:45 conclusion
51:28 HLAB27 quiz
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