Spondylitis.org

A Nonprofit Organization dedicated to the quest to cure ankylosing spondylitis & related diseases, and empowering all affected to live life to the fullest.

[Spondylitis.org @spondylitis]

What a month of amazing awareness! 📷Congratulations to all the teams! Thank you to everyone who logged steps with Walk Your AS Off. NASS AS Buzzers, BEKHTEREV NORGE, and NASS ORANGE APPLES have taken the top spots!

I really appreciate all the support and WYASO love. Remember, you can keep logging steps all year to earn a medal for walking one million steps (or more). If you have any questions about the walk, merch, fundraising, or just want to say hi... email me! [email protected] Keep finding your happy pace! https://t.co/u9JHvZXDkg
1st NASS AS Buzzers
2nd BEKHTEREV NORGE
3rd NASS ORANGE APPLES Walk Your AS OFF
SAA Home Team
Kick AS Striders
The Walking Spondies
Rockin' Weebles: Weebles Kick A.S.
NCSpondy
Rheumy Ravers
Nordic Walkers
Florida Walkers
MudSliders
A.S. Busters Canada
Atlanta Chronic Pain SAA Support Group Team
NYC&LI Warriors
#spondylitis #AnkylosingSpondylitis #spoonies #wyaso2026

[Spondylitis.org @spondylitis]

Why do prescription medications cost so much?

The answer is more complicated than you might realize.

In the latest episode of Spondycast, Chuck Melendi, founder of Disruptive Dialogue, breaks down the complex system behind prescription drug pricing and explores who really determines what patients pay for their medications.

Tune in to learn about the many players involved in drug pricing, why costs can vary so widely, and what it all means for people living with spondyloarthritis and other chronic conditions.

Listen now: https://t.co/JdXU7t7BdJ

#Spondycast #Spondyloarthritis #HealthcareCosts #PrescriptionDrugs #PatientAdvocacy #ankylosingspondylitis

[Spondylitis.org @spondylitis]

Summer is just around the corner, and you know what that means. Travel. Disrupted routines, multiple activities that stretch your energy level, and of course, stress.

Fear not. We've put together some summer wellness tips to help you navigate this season like a pro!

Dive in: https://t.co/Eg4oAOF9Af

#spondyhacks #ankylosingspondylitis #wellness #healthtips #summer #energy #stressmanagement

[Spondylitis.org @spondylitis]

May is National Nurses Month!

This month, SAA recognizes and thanks nurses for all of their hard work, care, and dedication they bring to their patients and community every day. If you know or see a nurse during this month, take a moment and thank them for the important role they play in the healthcare system.

#NationalNursesMonth #ThankANurse #HealthcareWorkers #Spondyloarthritis #Spondylitis

[Spondylitis.org @spondylitis]

There's still time to watch - and at no charge!

Catch up on presentations from our 8th Annual Global Spondyloarthritis Summit. This year’s theme: "Living Well with SpA: Practical Approaches to Everyday Challenges," offers practical strategies on managing fatigue, nutrition, resilience, career adaptations, the latest SpA insights, and more.

Whether you’re newly diagnosed or years into your journey, the Summit is for you.

Tune in now: https://t.co/xGXu6aYhQe

#spondysummit2026 Spondyloarthritis #ChronicDisease #rheumatic #fatigue #jointpain #backpain

[Spondylitis.org @spondylitis]

It's not stress. It's not your mattress. It's not in your head.

1 in 4 patients have seen five or more health professionals in search of a diagnosis. We Move Differently with Spondyloarthritis—long before diagnosis.

If your pain improves with movement, it might be time to ask why.

Getting answers starts with awareness.

https://t.co/LbgHhzAjsL

#WeMoveDifferently #NotJustBackPain #InvisibleIllness #axspa #spondylitis

[Spondylitis.org @spondylitis]

ONE week until the end of May… keep logging your steps! This May, the entire month is dedicated to AS awareness.

You can join SAA by logging steps in our step counter and by raising funds for the walk. Be sure to sign up for a team and set up a fundraising profile!

Build a new walking habit while raising awareness. Individual and team step totals will be available in early June 2026. Join us and Walk Your AS Off to find your Happy Pace! https://t.co/u9JHvZX5uI
#spondylitis #ankylosingspondylitis #ChronicPain #spoonies

[Spondylitis.org @spondylitis]

Fill-in-the-Blank:

I move differently with spondyloarthritis because ________.

The more we talk about spondyloarthritis, the more people get diagnosed earlier.

Join the movement: https://t.co/LbgHhzzLDd

#WeMoveDifferently #SpAAwarenessMonth #chronicillness #spondylitis #fatigue #NotJustBackPain #InvisibleIllness

[Spondylitis.org @spondylitis]

Insurance shouldn't MAKE you sick to prove you're sick.
Calling ALL SAA Advocates! Today’s the day to call your lawmakers in Congress and urge them to co-sponsor the #SafeStepAct.

"Step therapy" (or "fail first") forces patients to try and fail on insurer-preferred drugs before receiving the medication their doctor prescribed.

It’s time for the right treatment to be the FIRST treatment, not a last resort. The Safe Step Act requires insurance companies to approve appropriate treatments more quickly, helping keep patients healthy.

Join us TODAY and make that call! It will only take FIVE minutes!

We provide the brief script and phone numbers here: https://t.co/ywl5bPMVnd
#chronicpain #ankylosingspondylitis #spoonies

[Spondylitis.org @spondylitis]

What does self-care really mean when you’re living with chronic illness — and how does prioritizing your wellness affect the people around you?

In the latest episode of Spondycast, Adrine Avetyan, MA, LMFT, founder of Scalp Sanctuary, shares insights on redefining self-care, creating restorative routines, and understanding how personal wellness can positively influence family dynamics.

Listen now: https://t.co/CJjBQVXSmJ

#Spondycast #SelfCare #ChronicIllness #Spondyloarthritis #WellnessJourney #SpALife

[Spondylitis.org @spondylitis]

May 19th is IBD Awareness Day.

Inflammatory Bowel Disease (IBD) is a long-term illness that causes inflammation in the digestive tract. The two most common types are Crohn’s disease and ulcerative colitis. However, IBD can affect more than just the gut. Some people also experience spine and joint inflammation, known as enteropathic arthritis. About 1 in 5 people with Crohn’s or ulcerative colitis may develop this condition. By sharing information, we can help others understand the full impact of IBD and the unexpected symptoms it can bring.

You can find more information in the “Enteropathic” section on https://t.co/okqUovRlzR.
https://t.co/Kpm7f6QmGO

#WorldIBDDay #CrohnsDisease #UlcerativeColitis #Spondyloarthritis #Enteropathic #Spondylitis

[Spondylitis.org @spondylitis]

Every axSpA journey is different — but many share common hurdles along the way.

From delayed diagnosis to learning how to manage symptoms and daily life, our community members opened up about their lived experiences with axial spondyloarthritis. Their insights helped shape a new interactive infographic that visually represents the realities of living with axSpA.

Take a closer look and hear the stories behind the diagnosis.

https://t.co/e9NX2lNlr0

#axSpA #Spondylitis #ArthritisAwareness #ChronicPain #CommunityVoices #SpAAwarenessMonth

[Spondylitis.org @spondylitis]

Two weeks until the end of May… keep logging your steps! This May, the entire month is dedicated to AS awareness. You can join SAA by logging steps in our step counter and by raising funds for the walk. Be sure to sign up for a team and set up a fundraising profile!

Build a new walking habit while raising awareness. Individual and team step totals will be available in early June 2026. Join us and find your Happy Pace! https://t.co/u9JHvZX5uI
#spondylitis #ankylosingspondylitis #chronicpain #spoonies

[Spondylitis.org @spondylitis]

May is Spondylitis Awareness Month!📷
Whether you shout it from the rooftops or quietly “wear” your awareness, there are many ways to participate, and now is a great time to get started.

Check out these EIGHT Ways to Spread Spondylitis Awareness: https://t.co/HFIHKqMCyu
#ankylosingspondylitis #chronicpain #spoonies #spondylitis

[Spondylitis.org @spondylitis]

Living with spondyloarthritis doesn’t mean giving up the activities that matter most. How you do things can make a difference.

In the newest episode of Spondycast, Janet Poole, PhD, OTR/L returns to discuss practical ways people with SpA can modify daily activities to help conserve energy, reduce discomfort, and continue doing the things they enjoy.

Whether at home, at work, or during hobbies and recreation, small adaptations can support better quality of life.

Listen now: https://t.co/6cdVvn5R4I

#Spondycast #SpondyloarthritisAwareness #SpA #OccupationalTherapy #ChronicDisease #healthpodcast

[Spondylitis.org @spondylitis]

You wake up stiff.
You stretch to feel better.
You keep moving because it helps.

We Move Differently with Spondyloarthritis—and sometimes, that difference is the first clue.

If you're still searching for answers, learn the signs and symptoms. If you're already living with AS, share your story to help raise awareness so more people can get diagnosed sooner.

Click to connect: https://t.co/LbgHhzzLDd

#WeMoveDifferently #SpAAwarenessMonth #ChronicBackPain #spondylitis #axspa

[Spondylitis.org @spondylitis]

Five Spondy Patients. Five Different Points of View. One Common Bond. In our next show, SAA Support Group Leaders Diana Castaldini and Andrew Sykaluk, along with AS patients Ned Howey, Victoria Killian, and Kathy Miller, share their journeys and perspectives, building empathy and connection through the power of story.

SAA Storytellers: Your Stories on Stage is a virtual community storytelling show that extends the stories from our quarterly newsmagazine, Spondylitis Plus. Each show features people sharing their experiences living with ankylosing spondylitis.

Register now, then tune in to watch on YouTube on Friday, June 12th, at 5:00 PM PDT: https://t.co/ydcuNUXtHN
#spondylitis #ankylosingspondylitis #spoonie #chronicpain

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[Spondylitis.org @spondylitis]

Did you miss a presentation from this year's Global Spondyloarthritis Summit? Are there sessions that you want to watch again? Enjoy free access now through May 31.

Watch Now: https://t.co/xGXu6aYhQe

#spondysummit2026 #ankylosingspondylitis #axspa #fatigue #diet #resilience #career #relationships