A Nonprofit Organization dedicated to the quest to cure ankylosing spondylitis & related diseases, and empowering all affected to live life to the fullest.
Encino, CA
Joined January 2009
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What's the connection between fatigue, sleep, pain and psoriatic arthritis?
In this episode of Spondycast’s Psoriatic Arthritis Series, host @VinceG222 chats with rheumatologist Janki Trivedi, MD, for insights on why fatigue is so common in PsA and how inflammation, pain, disrupted sleep, and other health conditions may contribute.
spondylitis.org/spondycast-p…
#inflammation #pain #sleep #fatigue #brainfog #psoriaticarthritis #psoriasis
Stop insurers from weaponizing your DNA! 🧬 New York Action Alert! 🚨
If you live in NY and have spondylitis or related conditions, a new bill (Senate Bill S09695) aims to protect your genetic privacy.
This bill bans life, long-term care, and disability insurers from using your genetic test results to:
❌ Drop your coverage
❌ Deny your application
❌ Increase your rates
Spondylitis patients shouldn't have to choose between getting an accurate genetic diagnosis and keeping affordable insurance.
🧬 Help us fight for your genetic privacy! Use this link to join our quick campaign to NY lawmakers today: bit.ly/NY-Genetic-Privacy
#spondylitis #chronicpain #ankylosingspondylitis
ALT A photo of a set of keys in silver, copper, and rose gold next to a colorful replica of a DNA chain. The Spondylitis Association of America logo appears in white.
October 29 is World Psoriasis Day.
Did you know that:
Up to 30 percent of people with psoriasis also develop psoriatic arthritis.
PsA may strike at any age, but most commonly begins between the ages of 30 and 50.
About 20 percent of patients with PsA will develop spinal involvement, which is called psoriatic spondylitis.
spondylitis.org/about-spondy…
#Psoriasis #psoriaticarthritis #psoriasissymptoms #psoriasisdiagnosis #psoriasistreatment #psoriasismedication #psoriasisawareness #PsA
In our latest episode of Spondycast, board-certified music therapist Vanya Green, LPCC, MT-BC, explains how music therapy can help people with spondyloarthritis manage chronic pain and stress. She shares what research shows, what to expect in a session, and simple practices to try at home.
Listen now: spondylitis.org/podcasts/epi…
#musictherapy #chronicpain #emotionalwellbeing #stress #mindbodyconnection
Did you know that October is National Physical Therapy Month?
For people living with SpA, physical therapy can help you stay flexible, improve your posture, build strength, and move more easily in daily life.
A physical therapist who understands your needs can help you find what works best for you. Everyone moves differently, and having the right support really matters.
spondylitis.org/podcasts-cat…
#NationalPhysicalTherapyMonth #Spondyloarthritis #SpA #PhysicalTherapy #axspa #spondylitis
In our latest Spondycast episode, retired rheumatologist Dr. W. Patrick Knibbe draws on decades of caring for patients in rural communities to share practical strategies for managing spondyloarthritis when specialty care is hard to reach, from building a strong healthcare team to preparing for specialist appointments and overcoming long distances and other barriers to care.
spondylitis.org/podcasts/epi…
#rheumatologistshortage #telehealth #ruralcare #biologicinfusion
#symptomtracking
October 19 is World Pediatric Bone and Joint Day.
Many people are unaware that children can have arthritis, often leading to delays in diagnosis and treatment. Raising awareness is the first step towards understanding and combating juvenile arthritis.
Connect the dots: spondylitis.org/october-heal…
#WorldPediatricBoneandJointDay #PediatricBoneJointDay #PediatricBone #kidarthritis #spondylitis #juvenilearthritis #rheumatology
Celebrate Cartober this October by donating a vehicle to SAA! 💛
Cartober is officially here! Throughout October, we’re celebrating the power of vehicle donations and their impact on the community we serve.
Donating a car to SAA is free and easy. You receive a tax write-off and avoid the hassle of selling.
Make an impact today: spondylitis.org/get-involved…
#spondylitis #ankylosingspondylitis #chronicpain
ALT A colorful illustration of three diverse people holding pink cars of various types. The text reads, “Every Car Can Drive Change.”
Spondylitis Association of America
The 19th Annual Banding Together Webathon, benefiting SAA, starts TODAY and runs through Sunday, October 16-18. This year’s compilation is available NOW, and when you donate $20 or more, you’ll receive an exclusive download. 🎵
Thank you for banding together with SAA to help us deliver our mission: To be a leader in the quest to cure ankylosing spondylitis and related diseases, and to empower those affected to live their lives to the fullest.
💙💙💙
Check it out here: spondylitis.org/webathon/
#spondylitis #ankylosingspondylitis #chronicpain
Did you know that spinal pain—specifically low back and neck pain—affects approximately one billion people worldwide and ranks as the World Health Organization’s leading cause of disability globally? Physical activity, proper workplace ergonomics, balanced nutrition, and emotional well-being aid in good spinal health.
Your back pain might be telling you something.
Persistent back pain that starts before age 45, improves with movement, wakes you during the night or occurs with other symptoms may have an inflammatory cause.
Learn about spondyloarthritis: spondylitis.org/october-heal…
#worldspineday #backpain #physicalactivity #inflammatory #spondyloarthritis #spinehealth
Stop Insurance Robots from Denying Spondylitis Care! 🛑🤖
Medicare Advantage plans use AI to instantly deny costly treatments for spondylitis, with computer programs—not doctors—cutting off care and forcing patients to wait weeks for appeals.
H.R. 9734 (Protecting Patients from Automated Denials Act) bans these "Robot Denials" and requires a qualified doctor to review and sign off on any denial.
Tell lawmakers: computer programs shouldn't be practicing medicine! Act today: bit.ly/StopInsuranceRobots
#spondylitis #ankylosingspondylitis #rheumatology #chronicpain
ALT An image of a white robot looking into the camera while holding an iPad. The Spondylitis Association of America logo is white.
Spondyloarthritis (SpA) refers to a family of closely related diseases that share common features – chief among them being inflammatory arthritis in the spine and other joints.
This World Arthritis Day, we join the global effort to raise awareness of the more than 200 rheumatic and musculoskeletal diseases (RMDs) affecting close to 500 million people worldwide.
spondylitis.org/october-heal…
#arthritis #worldarthritisday #chronicillness #spondyloarthritis #rheumatic #musculoskeletaldiseases
Look what we did together in CA! 🚨
Governor Newsom just signed the Safeguarding Genetic Information Act (AB 1798) into law! Here is why this is a major win for our spondylitis community:
🔒 Closes the Loophole: Bans life, disability, and long-term care insurers in CA from using genetic data to discriminate against you.
💪 Fearless Testing: Get the early genetic and biomarker testing you need without worrying about future insurance penalties.
📅 Effective Jan 1, 2027: Insurers cannot force you to take genetic tests, demand your results, or deny you coverage based on your DNA.
Your DNA belongs to you—not to insurance underwriters. Thank you to every advocate in our SAA community who raised their voice alongside SAA! 💙
Learn more here: bit.ly/WIN-SafeguardGeneticI…
#spondylitis #ankylosingspondylitis #chronicpain
ALT CA Passes the Safeguarding Genetic Information Act! Photos with the CA Capitol building in the background and a circle slash over a genetic link.
Your first rheumatology appointment is coming up. Are you prepared?
A little preparation can help you make the most of your visit. Before your appointment, try to:
- Write down your symptoms and when they started.
- Note what makes your pain better or worse.
- List medications and supplements you're taking.
- Gather relevant medical and family history.
- Write down questions you want answered.
You don't need to have all the answers. Your observations are a great place to start.
October is Health Literacy Month. Tips like these can help bridge communication gaps between patients and healthcare providers. Video clip from Spondycast episode 142.
spondylitis.org/october-heal…
#healthliteracy #rheumatology #ankylosingspondylitis #backpain #chronicillness #spondyloarthritis #symptoms #diagnosis
In this follow up episode, pediatric psychologist Alana Goldstein Leever, PsyD, explains how early mental health support can help children with juvenile spondyloarthritis break the cycle of pain, worry, and avoidance and cope with injections, infusions, and other needle-related procedures.
Tune in now: spondylitis.org/podcasts/epi…
#juvenilespondyloarthritis #needlefear #proceduralpain #pediatricpsychology #copingstrategies #integratedcare
Are you comfortable and able to honestly discuss the challenges of relationships and sexual health while navigating chronic pain and a chronic illness? Here are some insights you need to hear.
Host @VinceG222 sits down with Rheumatology Nurse Practitioner Iris Zink, MSN, ANP, RN-BC for an important conversation about how pain, fatigue, and body image concerns can affect intimacy and sexual well-being, along with practical communication strategies and treatment considerations that can help individuals and couples stay connected.
Tune in: spondylitis.org/spondycast-p…
#psoriaticarthritis #intimacy #romanticrelationships #sexualhealth #sexualwellbeing #chronicpain #spondyloarthritis
FREE online workshop: Join Helen Jones and Jamie Boder, who both live with AS, for Finding Your Way Forward with AS, a free online workshop exploring the emotional and physical changes that can accompany ankylosing spondylitis (AS) and axial spondyloarthritis (axial SpA).
Together, we’ll explore grief around changes to your body, identity and life; working with difficult emotions; rebuilding your sense of self; and finding ways to return to movement and activities you love.
🗓️ Saturday 3 October 2026
⏰ 3:00–5:00 pm UK time / 10:00 am–12:00 pm Eastern US time
💻 Online via Zoom. Workshop from 3:00–4:30 pm UK time, followed by a live Q&A until 5:00 pm.
Free and open to the AS/axial SpA community.
Register here: goteamup.com/.../108935045-f…
#spondylitis #ankylosingspondylitis #chronicpain
Shoutout to SAA’s own Richard Howard, who was on Capitol Hill today representing both SAA and the spondylitis community as an advocate and a person living with spondylitis! 📢
Rich joined the @CSROAdvocacy Coalition of State Rheumatology Organizations (CSRO) Hill Day to urge federal lawmakers to take urgent action on critical healthcare reforms:
• 💊PBM & Co-pay Reform
• 🩺Insurance Overhauls
• 💰Medicare Payment Stability
• 🧬Biosimilar Access
Thank you, Richard, for bringing the powerful voice of the spondylitis community straight to Washington!
#spondylitis #DayOnTheHill #rheumatology #ankylosingspondylitis
ALT Photo in front of Capitol Hill: Richard Howard, Darcy McLaughlin, Doctors Huynh Tran, Gary Feldman, and Kiana Taba. A group of diverse people smiling in front of Capital Hill.
ALT Photo in front of Capitol Hill: Richard Howard, Doctors Huynh Tran, Gary Feldman, and Kiana Taba. A group of diverse people smiling in front of Capital Hill.