Bent Not Broken

Bent Not Broken This page was created by a lifelong educator, artist, veteran, and someone living with the challenges of newly diagnosed HLA-B27 and ankylosing spondylitis.

It’s a space to share stories, tools, and support—because we’re bent, not broken.

This past week, a student (after being disciplined) called me a “Hunchback”. Maybe I should just embrace and own it? It ...
13/10/2025

This past week, a student (after being disciplined) called me a “Hunchback”. Maybe I should just embrace and own it? It hurt, but he’s a child, so I forgive him.

23/08/2025
1. Ivarmacitinib — New JAK1 pill for ASResearchers tested a new medication called ivarmacitinib that targets inflammatio...
14/08/2025

1. Ivarmacitinib — New JAK1 pill for AS
Researchers tested a new medication called ivarmacitinib that targets inflammation at the genetic “switchboard” of immune cells. In just three months, nearly half the people taking it felt better, compared to about a third on sugar pills. Side effects were generally mild, and benefits lasted at least six months.
🔗 https://spondylitis.org/research-new/ivarmacitinib-a-potential-new-jak1-inhibitor-for-as/

2. Upadacitinib — Fast pain relief
A real-world study found that people with AS or related spine inflammation felt less back and night pain within days of starting upadacitinib. By three months, more than a third reached “low disease activity,” meaning their symptoms were much more manageable.
🔗 https://www.rheumatologyadvisor.com/reports/upa-reduces-pain-in-axspa/

3. Bimekizumab — Lasting results over years
Long-term studies show that the biologic drug bimekizumab can keep AS symptoms under control for years, with more than half of patients reporting major improvement and most showing no new spine damage.
🔗 https://www.medscape.com/viewarticle/axial-spondyloarthritis-ankylosing-spondylitis-eular-2025-2025a10002jk

4. UK’s updated AS treatment guidelines
The UK’s rheumatology experts updated their playbook for treating AS, adding newer biologics and targeted drugs, and advising careful use for people who also have gut inflammation.
🔗 https://pmc.ncbi.nlm.nih.gov/articles/PMC12107049/

5. Seniprutug — Russia’s homegrown AS drug
Russia approved a locally developed medicine for AS called seniprutug. Trials there suggest it works and is safe, and it’s set to be available in dozens of regions.
🔗 https://gxpnews.net/en/2025/04/the-worlds-first-drug-for-ankylosing-spondylitis-soon-to-be-delivered-to-45-regions-of-the-russian-federation/



6. New blood test for earlier diagnosis
A test that detects a protein called 14-3-3η could help spot AS sooner, even in people without the usual HLA-B27 gene marker, when combined with other lab results.
🔗 https://spondylitis.org/research-new/a-new-blood-test-for-axial-spondyloarthritis-the-anti-14-3-3eta-multiplex-test/



7. HLA-B27 makes certain immune cells more aggressive
Scientists discovered that the HLA-B27 gene can push some aging immune cells into “attack mode,” potentially making inflammation worse. Blocking a specific receptor may calm this effect.
🔗 https://arthritis-research.biomedcentral.com/articles/10.1186/s13075-025-03585-w

8. Theories on how HLA-B27 causes AS
Three main ideas are still under investigation:
– The gene makes “look-alike” proteins that trick the immune system
– Its proteins misfold, stressing cells
– It forms unusual shapes that signal immune attack
Gut bacteria and eye inflammation may be linked too.
🔗 https://www.nature.com/articles/s41584-024-01074-5

9. Treating AS like an allergy?
Some researchers wonder if AS could be calmed by “retraining” the immune system or changing gut bacteria—similar to allergy shots—so it stops overreacting.
🔗 https://rheumlab.org/exploring-root-causes-and-developing-new-treatments-for-ankylosing-spondylitis/



10. Team-based care for AS
Doctors are pushing for closer teamwork between spine specialists, heart doctors, and imaging experts, since AS can also affect the heart and other organs.
🔗 https://esmed.org/MRA/mra/article/view/6537

11. AI to read spine X-rays
A new computer program can grade spine damage from X-rays automatically. It’s not ready for clinics yet, but could one day save doctors time and make tracking AS more precise.
🔗 https://arxiv.org/abs/2308.05123

Manually grading structural changes with the modified Stoke Ankylosing Spondylitis Spinal Score (mSASSS) on spinal X-ray imaging is costly and time-consuming due to bone shape complexity and image quality variations. In this study, we address this challenge by prototyping a 2-step auto-grading pipel...

🧠 Today’s AS FactFatigue in Ankylosing Spondylitis is one of the most common and disabling symptoms, affecting up to 70%...
04/08/2025

🧠 Today’s AS Fact
Fatigue in Ankylosing Spondylitis is one of the most common and disabling symptoms, affecting up to 70% of patients. It’s not just about being tired — it’s a deep, chronic exhaustion often linked to inflammation, sleep disruption, and pain.
📌 “AS fatigue can be as debilitating as spinal stiffness, affecting both mental clarity and physical function.”

Citation (on image):
O’Shea, F. D., et al. (2019). Fatigue in ankylosing spondylitis: causes, consequences, and management. Rheumatology, 58(8), 1434–1442. https://doi.org/10.1093/rheumatology/kez087

29/07/2025

AS often affects the eyes

Up to 40% of people with AS experience anterior uveitis, a painful inflammatory eye condition that can lead to vision problems.

• Citation: Zeboulon, N., et al. (2008). Rheumatology, 47(3), 416–419.

Constantly telling myself this. Literally.
25/07/2025

Constantly telling myself this. Literally.

Here is a resource for strengthening your posture. I have one in my own bedroom and use it daily.
25/07/2025

Here is a resource for strengthening your posture. I have one in my own bedroom and use it daily.

Search for 'Pettibon' at Walmart.com.

25/07/2025

📅 Fact Friday — July 25, 2025
🧠 FACT FRIDAY

🎯 Did you know? Ankylosing Spondylitis (AS) is now considered part of a broader condition called axial spondyloarthritis (axSpA)—which includes people who do not yet show spine damage on X-rays.

That means:
✅ You can still have AS symptoms without visible damage
✅ MRI and HLA-B27 tests often show inflammation earlier
✅ The average delay in diagnosis is still 7–10 years

🧬 If you or someone you love is HLA-B27 positive and experiencing chronic back pain, fatigue, or stiffness, don’t wait. Keep asking questions. Keep pushing.

💪 You're not imagining things—and you’re not alone.

25/07/2025

🧡 Welcome to Bent Not Broken 🧡
Standing Tall Despite HLA-B27 & Ankylosing Spondylitis

Whether you're newly diagnosed, living with chronic pain, caring for a loved one, or carrying the HLA-B27 gene and just want to learn more—this space is for you.

📌 What You’ll Find Here:
🔹 Real stories from people just like you
🔹 Resources to understand HLA-B27 and AS
🔹 Daily life hacks for pain, fatigue, and flare-ups
🔹 Movement and mental health support
🔹 Updates on treatments, research, and advocacy
🔹 A community that understands what it means to be bent, not broken

🌄 No judgment. No pressure. Just support, knowledge, and connection—no matter where you are on your journey.

🗨️ Introduce yourself in the comments if you feel comfortable!
✅ What’s your connection to AS or HLA-B27?
✅ What’s something that gives you strength lately?

You're not alone—and you’re always welcome here.

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