My #AxSpA Story for @spondylitis
When I was diagnosed w. #AnkylosingSpondylitis in 2009, we didn’t know the #DelayToDiagnosis meant I had damage that couldn't be fixed. Learn how robotic exoskeletons help patients like me. #disability
🔗
spondylitis.org/patient-stor...
When I was diagnosed w. #AnkylosingSpondylitis in 2009, we didn’t know the #DelayToDiagnosis meant I had damage that couldn't be fixed. Learn how robotic exoskeletons help patients like me. #disability
🔗
spondylitis.org/patient-stor...
Carrie Kellenberger - Spondylitis Association of America - Ankylosing Spondylitis
I never expected to lose my mobility, but that is what happened in July of 2014 when my body gave out on me and I could no longer move the way I used to. Year by year, I lost my energy to move and soo...
spondylitis.org
February 14, 2026 at 5:19 PM
My #AxSpA Story for @spondylitis
When I was diagnosed w. #AnkylosingSpondylitis in 2009, we didn’t know the #DelayToDiagnosis meant I had damage that couldn't be fixed. Learn how robotic exoskeletons help patients like me. #disability
🔗
spondylitis.org/patient-stor...
When I was diagnosed w. #AnkylosingSpondylitis in 2009, we didn’t know the #DelayToDiagnosis meant I had damage that couldn't be fixed. Learn how robotic exoskeletons help patients like me. #disability
🔗
spondylitis.org/patient-stor...
My "complex patient" resume includes:
#hEDS (obvious by age 6, not dx'ed for decades)
#RheumatoidArthritis
#AnkylosingSpondylitis
#Osteoarthritis (see: untreated hEDS)
Traumatic spine injury - fusion at L5/S1
Shoulder replacement
...And docs like this will still refuse to treat me for pain.
#hEDS (obvious by age 6, not dx'ed for decades)
#RheumatoidArthritis
#AnkylosingSpondylitis
#Osteoarthritis (see: untreated hEDS)
Traumatic spine injury - fusion at L5/S1
Shoulder replacement
...And docs like this will still refuse to treat me for pain.
February 14, 2026 at 1:28 AM
My "complex patient" resume includes:
#hEDS (obvious by age 6, not dx'ed for decades)
#RheumatoidArthritis
#AnkylosingSpondylitis
#Osteoarthritis (see: untreated hEDS)
Traumatic spine injury - fusion at L5/S1
Shoulder replacement
...And docs like this will still refuse to treat me for pain.
#hEDS (obvious by age 6, not dx'ed for decades)
#RheumatoidArthritis
#AnkylosingSpondylitis
#Osteoarthritis (see: untreated hEDS)
Traumatic spine injury - fusion at L5/S1
Shoulder replacement
...And docs like this will still refuse to treat me for pain.
Injection day again, those 2 weeks come round so fast. 💉 😳
#Ankylosingspondylitis warrior. 💪🏻
#Ankylosingspondylitis warrior. 💪🏻
February 12, 2026 at 9:12 AM
Injection day again, those 2 weeks come round so fast. 💉 😳
#Ankylosingspondylitis warrior. 💪🏻
#Ankylosingspondylitis warrior. 💪🏻
Young adults in Singapore: “Even if I were to wear the #disability lanyard, I’m...sceptical people would give up their seat for me.”
Pang is 25. He has #AnkylosingSpondylitis.
We have many similar stories in #Taiwan with 'Who gets a disability seat?'
🔗
www.channelnewsasia.com/cna-insider/...
Pang is 25. He has #AnkylosingSpondylitis.
We have many similar stories in #Taiwan with 'Who gets a disability seat?'
🔗
www.channelnewsasia.com/cna-insider/...
They’re young, they look healthy, but they need a seat on the train. This is why
These young adults suffer from autoimmune diseases whose symptoms are not often visible, leading to misconceptions and judgement. How do they navigate work, relationships and life in general while end...
www.channelnewsasia.com
February 11, 2026 at 6:39 PM
Young adults in Singapore: “Even if I were to wear the #disability lanyard, I’m...sceptical people would give up their seat for me.”
Pang is 25. He has #AnkylosingSpondylitis.
We have many similar stories in #Taiwan with 'Who gets a disability seat?'
🔗
www.channelnewsasia.com/cna-insider/...
Pang is 25. He has #AnkylosingSpondylitis.
We have many similar stories in #Taiwan with 'Who gets a disability seat?'
🔗
www.channelnewsasia.com/cna-insider/...
❓How are #AnkylosingSpondylitis aka #AxSpA and fibromyalgia rated on the McGill Pain Index?
❗They are consistently rated among 10 of the most painful diseases in the world.
"The chronic pain associated with these diseases comes very close to the pain experienced with childbirth."
#PainAwareness
❗They are consistently rated among 10 of the most painful diseases in the world.
"The chronic pain associated with these diseases comes very close to the pain experienced with childbirth."
#PainAwareness
![❓How are #AnkylosingSpondylitis aka #AxialSpondyloarthritis and fibromyalgia rated on the McGill Pain Index?
❗They are consistently rated among 10 of the most painful diseases in the world.
"The chronic pain associated with these diseases comes very close to the pain experienced with childbirth. The main thing to remember is that childbirth doesn’t last forever, but you can look forward to a lifetime of unending pain with AS, fibromyalgia and ME."
~ 70 Things About My Invisible Illness You Might Not Know, 2015, Carrie Kellenberger, My Several Worlds (LINK IN COMMENTS)
[Image description]
An image of vertical line with numbers starting at 0 through 50.
😐 10 and 20 on the McGill Index are: sprain, fracture, and toothache and arthritis having the same pain score.
😧 22-28 include pain such as after shingles pain (22), non terminal cancer (26), chronic back pain (28) and chronic migraine (29)
😭 30 to 38 on the McGill Index are: fibromyalgia (30), Ankylosing Spondylitis (32), childbirth with training (32), childbirth no training (36), and amputation of toe or finger (39).
🤯 CRPS at 46 is the most painful disease in the world.
#MySeveralWorlds #SolvePainTogether #LetsTalkAboutPain
#ArthritisAwareness
#CRPS #APS #ChronicPainAwareness #pwME
#PainAwareness](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:62wcb64mxz2mvwghbt6drwu5/bafkreiaspombhnd4knjeauavdw2n7jgfa7ynv7dphnxhzizv4esfdkdrnu@jpeg)
February 8, 2026 at 10:03 PM
❓How are #AnkylosingSpondylitis aka #AxSpA and fibromyalgia rated on the McGill Pain Index?
❗They are consistently rated among 10 of the most painful diseases in the world.
"The chronic pain associated with these diseases comes very close to the pain experienced with childbirth."
#PainAwareness
❗They are consistently rated among 10 of the most painful diseases in the world.
"The chronic pain associated with these diseases comes very close to the pain experienced with childbirth."
#PainAwareness
#MickMars Team BREAKS SILENCE On #MötleyCrüe Situation
#Rock #arbitrator #motleycrue #guitarist #band #EdMcPherson #AnkylosingSpondylitis #metal #80s #1980s
www.youtube.com/watch?v=6cGa...
#Rock #arbitrator #motleycrue #guitarist #band #EdMcPherson #AnkylosingSpondylitis #metal #80s #1980s
www.youtube.com/watch?v=6cGa...
Mick Mars Team BREAKS SILENCE On Mötley Crüe Situation
YouTube video by Rock Feed
www.youtube.com
January 31, 2026 at 2:56 PM
#MickMars Team BREAKS SILENCE On #MötleyCrüe Situation
#Rock #arbitrator #motleycrue #guitarist #band #EdMcPherson #AnkylosingSpondylitis #metal #80s #1980s
www.youtube.com/watch?v=6cGa...
#Rock #arbitrator #motleycrue #guitarist #band #EdMcPherson #AnkylosingSpondylitis #metal #80s #1980s
www.youtube.com/watch?v=6cGa...
Name changes for #AxialSpondyloarthritis and #Sjogren's a big deal! #axSpA has come to encompass the spectrum of disease formerly divided into non-radiographic vs. radiographic axial SpA.
🔗
buff.ly/3CISx4v
#AnkylosingSpondylitis #nrAxSpA
@asintfed.bsky.social
told @gohealio.bsky.social
🔗
buff.ly/3CISx4v
#AnkylosingSpondylitis #nrAxSpA
@asintfed.bsky.social
told @gohealio.bsky.social
buff.ly
January 26, 2026 at 8:28 PM
Name changes for #AxialSpondyloarthritis and #Sjogren's a big deal! #axSpA has come to encompass the spectrum of disease formerly divided into non-radiographic vs. radiographic axial SpA.
🔗
buff.ly/3CISx4v
#AnkylosingSpondylitis #nrAxSpA
@asintfed.bsky.social
told @gohealio.bsky.social
🔗
buff.ly/3CISx4v
#AnkylosingSpondylitis #nrAxSpA
@asintfed.bsky.social
told @gohealio.bsky.social
My #AxSpA Story for the SAA
When I was diagnosed with #AxSpA aka #AnkylosingSpondylitis in 2009, we didn’t know the #DelayToDiagnosis meant I had damage that couldn't be fixed. Learn how robotic exoskeletons help patients like me. #disability
🔗
spondylitis.org/patient-stor...
#ArthritisAwareness
When I was diagnosed with #AxSpA aka #AnkylosingSpondylitis in 2009, we didn’t know the #DelayToDiagnosis meant I had damage that couldn't be fixed. Learn how robotic exoskeletons help patients like me. #disability
🔗
spondylitis.org/patient-stor...
#ArthritisAwareness
Carrie Kellenberger - Spondylitis Association of America - Ankylosing Spondylitis
I never expected to lose my mobility, but that is what happened in July of 2014 when my body gave out on me and I could no longer move the way I used to. Year by year, I lost my energy to move and soo...
spondylitis.org
January 13, 2026 at 4:20 PM
My #AxSpA Story for the SAA
When I was diagnosed with #AxSpA aka #AnkylosingSpondylitis in 2009, we didn’t know the #DelayToDiagnosis meant I had damage that couldn't be fixed. Learn how robotic exoskeletons help patients like me. #disability
🔗
spondylitis.org/patient-stor...
#ArthritisAwareness
When I was diagnosed with #AxSpA aka #AnkylosingSpondylitis in 2009, we didn’t know the #DelayToDiagnosis meant I had damage that couldn't be fixed. Learn how robotic exoskeletons help patients like me. #disability
🔗
spondylitis.org/patient-stor...
#ArthritisAwareness
Young adults in Singapore: “Even if I were to wear the #disability lanyard, I’m...sceptical people would give up their seat for me.”
Pang is 25. He has #AnkylosingSpondylitis.
We have many similar stories in #Taiwan with 'Who gets a disability seat?'
🔗 www.channelnewsasia.com/cna-insider/...
Pang is 25. He has #AnkylosingSpondylitis.
We have many similar stories in #Taiwan with 'Who gets a disability seat?'
🔗 www.channelnewsasia.com/cna-insider/...
They’re young, they look healthy, but they need a seat on the train. This is why
These young adults suffer from autoimmune diseases whose symptoms are not often visible, leading to misconceptions and judgement. How do they navigate work, relationships and life in general while end...
www.channelnewsasia.com
January 10, 2026 at 12:45 AM
Young adults in Singapore: “Even if I were to wear the #disability lanyard, I’m...sceptical people would give up their seat for me.”
Pang is 25. He has #AnkylosingSpondylitis.
We have many similar stories in #Taiwan with 'Who gets a disability seat?'
🔗 www.channelnewsasia.com/cna-insider/...
Pang is 25. He has #AnkylosingSpondylitis.
We have many similar stories in #Taiwan with 'Who gets a disability seat?'
🔗 www.channelnewsasia.com/cna-insider/...
Research Article
Anti-Integrin αvβ6 Autoantibodies as a Biomarker for Ulcerative Colitis in Patients With Axial Spondyloarthritis
📖 www.jrheum.org/cgi/content/...
@schroeder-uhn.bsky.social @uhn.ca @uoftmedicine.bsky.social
#AnkylosingSpondylitis #Autoantibodies
Anti-Integrin αvβ6 Autoantibodies as a Biomarker for Ulcerative Colitis in Patients With Axial Spondyloarthritis
📖 www.jrheum.org/cgi/content/...
@schroeder-uhn.bsky.social @uhn.ca @uoftmedicine.bsky.social
#AnkylosingSpondylitis #Autoantibodies
January 9, 2026 at 2:39 PM
Research Article
Anti-Integrin αvβ6 Autoantibodies as a Biomarker for Ulcerative Colitis in Patients With Axial Spondyloarthritis
📖 www.jrheum.org/cgi/content/...
@schroeder-uhn.bsky.social @uhn.ca @uoftmedicine.bsky.social
#AnkylosingSpondylitis #Autoantibodies
Anti-Integrin αvβ6 Autoantibodies as a Biomarker for Ulcerative Colitis in Patients With Axial Spondyloarthritis
📖 www.jrheum.org/cgi/content/...
@schroeder-uhn.bsky.social @uhn.ca @uoftmedicine.bsky.social
#AnkylosingSpondylitis #Autoantibodies
Starting the new year off with my first injection of 2026 😁😱
#AnkylosingSpondylitis
#AnkylosingSpondylitis
January 1, 2026 at 1:12 PM
Starting the new year off with my first injection of 2026 😁😱
#AnkylosingSpondylitis
#AnkylosingSpondylitis
What can be done for ankylosing spondylitis? #backpain #spondylitis #ankylosingspondylitis #spine
... Continue to: youtube.com/shorts/9bgYK...
... Continue to: youtube.com/shorts/9bgYK...
What can be done for ankylosing spondylitis? #backpain #spondylitis #ankylosingspondylitis #spine
What can be done for ankylosing spondylitis? #backpain #spondylitis #ankylosingspondylitis #spine
youtube.com
December 18, 2025 at 8:06 AM
What can be done for ankylosing spondylitis? #backpain #spondylitis #ankylosingspondylitis #spine
... Continue to: youtube.com/shorts/9bgYK...
... Continue to: youtube.com/shorts/9bgYK...
What can be done for ankylosing spondylitis? #backpain #spondylitis #ankylosingspondylitis #spine
... Continue to: youtube.com/shorts/9bgYK...
... Continue to: youtube.com/shorts/9bgYK...
What can be done for ankylosing spondylitis? #backpain #spondylitis #ankylosingspondylitis #spine
What can be done for ankylosing spondylitis? #backpain #spondylitis #ankylosingspondylitis #spine
youtube.com
December 18, 2025 at 6:06 AM
What can be done for ankylosing spondylitis? #backpain #spondylitis #ankylosingspondylitis #spine
... Continue to: youtube.com/shorts/9bgYK...
... Continue to: youtube.com/shorts/9bgYK...
#Chronicillness Almost forgot to take my #Humira today (I take it weekly for #ankylosingspondylitis ). It’s ironic, since the worst day of my week was when I got a letter from my ins. co. saying they won’t cover it after 1/1! This is a problem since 1 box (2 doses) is more than my monthly income.
December 15, 2025 at 1:28 AM
#Chronicillness Almost forgot to take my #Humira today (I take it weekly for #ankylosingspondylitis ). It’s ironic, since the worst day of my week was when I got a letter from my ins. co. saying they won’t cover it after 1/1! This is a problem since 1 box (2 doses) is more than my monthly income.
Young adults in Singapore: “Even if I were to wear the #disability lanyard, I’m...sceptical people would give up their seat for me.”
Pang is 25. He has #AnkylosingSpondylitis.
We have many similar stories in #Taiwan with 'Who gets a disability seat?'
🔗 www.channelnewsasia.com/cna-insider/...
Pang is 25. He has #AnkylosingSpondylitis.
We have many similar stories in #Taiwan with 'Who gets a disability seat?'
🔗 www.channelnewsasia.com/cna-insider/...
They’re young, they look healthy, but they need a seat on the train. This is why
These young adults suffer from autoimmune diseases whose symptoms are not often visible, leading to misconceptions and judgement. How do they navigate work, relationships and life in general while end...
www.channelnewsasia.com
December 4, 2025 at 5:40 AM
Young adults in Singapore: “Even if I were to wear the #disability lanyard, I’m...sceptical people would give up their seat for me.”
Pang is 25. He has #AnkylosingSpondylitis.
We have many similar stories in #Taiwan with 'Who gets a disability seat?'
🔗 www.channelnewsasia.com/cna-insider/...
Pang is 25. He has #AnkylosingSpondylitis.
We have many similar stories in #Taiwan with 'Who gets a disability seat?'
🔗 www.channelnewsasia.com/cna-insider/...
Signs of ankylosing spondylitis (Strumpell-Bekhterev-Marie disease) #backpain #ankylosingspondylitis
... Continue to: youtube.com/shorts/wQ5A8...
... Continue to: youtube.com/shorts/wQ5A8...
Signs of ankylosing spondylitis (Strumpell-Bekhterev-Marie disease) #backpain #ankylosingspondylitis
Signs of ankylosing spondylitis (Strumpell-Bekhterev-Marie disease) #backpain #ankylosingspondylitis
youtube.com
December 2, 2025 at 6:06 PM
Signs of ankylosing spondylitis (Strumpell-Bekhterev-Marie disease) #backpain #ankylosingspondylitis
... Continue to: youtube.com/shorts/wQ5A8...
... Continue to: youtube.com/shorts/wQ5A8...
Name changes for #AxialSpondyloarthritis and #Sjogren's a big deal! #axSpA has come to encompass the spectrum of disease formerly divided into non-radiographic vs. radiographic axial SpA.
🔗
buff.ly/3CISx4v
#AnkylosingSpondylitis #nrAxSpA
@asintfed.bsky.social
told @gohealio.bsky.social
🔗
buff.ly/3CISx4v
#AnkylosingSpondylitis #nrAxSpA
@asintfed.bsky.social
told @gohealio.bsky.social
buff.ly
November 24, 2025 at 4:55 PM
Name changes for #AxialSpondyloarthritis and #Sjogren's a big deal! #axSpA has come to encompass the spectrum of disease formerly divided into non-radiographic vs. radiographic axial SpA.
🔗
buff.ly/3CISx4v
#AnkylosingSpondylitis #nrAxSpA
@asintfed.bsky.social
told @gohealio.bsky.social
🔗
buff.ly/3CISx4v
#AnkylosingSpondylitis #nrAxSpA
@asintfed.bsky.social
told @gohealio.bsky.social
Has anyone tried to go on a #TNFblocker (enbrel, #Remicade) for a second time? I tried #enbrel and was maybe on it for a month? Is it possible to retry it? #rheum #rheumatoidarthritis #autoimmune #crohns #creakyjoints #RA #chronicillness #spondyloarthritis #ankylosingspondylitis
November 16, 2025 at 2:18 AM
Has anyone tried to go on a #TNFblocker (enbrel, #Remicade) for a second time? I tried #enbrel and was maybe on it for a month? Is it possible to retry it? #rheum #rheumatoidarthritis #autoimmune #crohns #creakyjoints #RA #chronicillness #spondyloarthritis #ankylosingspondylitis
My #AxSpA Story for the Spondylitis Association of America
When I was diagnosed w. #AnkylosingSpondylitis in 2009, we didn’t know the #DelayToDiagnosis meant I had damage that couldn't be fixed. Learn how robotic exoskeletons help patients like me. #disability
🔗
spondylitis.org/patient-stor...
When I was diagnosed w. #AnkylosingSpondylitis in 2009, we didn’t know the #DelayToDiagnosis meant I had damage that couldn't be fixed. Learn how robotic exoskeletons help patients like me. #disability
🔗
spondylitis.org/patient-stor...
Carrie Kellenberger - Spondylitis Association of America - Ankylosing Spondylitis
I never expected to lose my mobility, but that is what happened in July of 2014 when my body gave out on me and I could no longer move the way I used to. Year by year, I lost my energy to move and soo...
spondylitis.org
November 15, 2025 at 7:43 AM
My #AxSpA Story for the Spondylitis Association of America
When I was diagnosed w. #AnkylosingSpondylitis in 2009, we didn’t know the #DelayToDiagnosis meant I had damage that couldn't be fixed. Learn how robotic exoskeletons help patients like me. #disability
🔗
spondylitis.org/patient-stor...
When I was diagnosed w. #AnkylosingSpondylitis in 2009, we didn’t know the #DelayToDiagnosis meant I had damage that couldn't be fixed. Learn how robotic exoskeletons help patients like me. #disability
🔗
spondylitis.org/patient-stor...
Hey! I just got diagnosed. My sacroiliitis does respond to Meloxicam, so I can’t suggest anything beyond “try a biologic”. But, have you checked r/ankylosingspondylitis? Yes TECHNICALLY a different diagnosis but they welcome all there.
November 10, 2025 at 6:19 AM
Hey! I just got diagnosed. My sacroiliitis does respond to Meloxicam, so I can’t suggest anything beyond “try a biologic”. But, have you checked r/ankylosingspondylitis? Yes TECHNICALLY a different diagnosis but they welcome all there.
Having to clean my room in tiny stages because of my back condition and it's taking me all day. Bah. #ankylosingspondylitis
November 9, 2025 at 8:54 PM
Having to clean my room in tiny stages because of my back condition and it's taking me all day. Bah. #ankylosingspondylitis
It’s that day again. Adalimumab 💉 Thursday. 😮💨 #ankylosingspondylitis
November 6, 2025 at 9:04 AM
It’s that day again. Adalimumab 💉 Thursday. 😮💨 #ankylosingspondylitis
Young adults in Singapore: “Even if I were to wear the #disability lanyard, I’m...sceptical people would give up their seat for me.”
Pang is 25. He has #AnkylosingSpondylitis.
We have many similar stories in #Taiwan with 'Who gets a disability seat?'
🔗 www.channelnewsasia.com/cna-insider/...
Pang is 25. He has #AnkylosingSpondylitis.
We have many similar stories in #Taiwan with 'Who gets a disability seat?'
🔗 www.channelnewsasia.com/cna-insider/...
They’re young, they look healthy, but they need a seat on the train. This is why
These young adults suffer from autoimmune diseases whose symptoms are not often visible, leading to misconceptions and judgement. How do they navigate work, relationships and life in general while end...
www.channelnewsasia.com
November 3, 2025 at 4:45 AM
Young adults in Singapore: “Even if I were to wear the #disability lanyard, I’m...sceptical people would give up their seat for me.”
Pang is 25. He has #AnkylosingSpondylitis.
We have many similar stories in #Taiwan with 'Who gets a disability seat?'
🔗 www.channelnewsasia.com/cna-insider/...
Pang is 25. He has #AnkylosingSpondylitis.
We have many similar stories in #Taiwan with 'Who gets a disability seat?'
🔗 www.channelnewsasia.com/cna-insider/...
I have worsening #AnkylosingSpondylitis in my thoracic spine and was awaiting experimental surgery in another country when the CT showed further damage, which I knew bc of more widespread pain.
Does anyone with AS have nodules in their lungs & liver? These showed up in the last 2 years.
Does anyone with AS have nodules in their lungs & liver? These showed up in the last 2 years.
October 25, 2025 at 3:57 AM
I have worsening #AnkylosingSpondylitis in my thoracic spine and was awaiting experimental surgery in another country when the CT showed further damage, which I knew bc of more widespread pain.
Does anyone with AS have nodules in their lungs & liver? These showed up in the last 2 years.
Does anyone with AS have nodules in their lungs & liver? These showed up in the last 2 years.
Name changes for #AxialSpondyloarthritis and #Sjogren's a big deal! #axSpA has come to encompass the spectrum of disease formerly divided into non-radiographic vs. radiographic axial SpA.
🔗
buff.ly/3CISx4v
#AnkylosingSpondylitis #nrAxSpA
@asintfed.bsky.social
told @gohealio.bsky.social
🔗
buff.ly/3CISx4v
#AnkylosingSpondylitis #nrAxSpA
@asintfed.bsky.social
told @gohealio.bsky.social
buff.ly
October 24, 2025 at 6:13 AM
Name changes for #AxialSpondyloarthritis and #Sjogren's a big deal! #axSpA has come to encompass the spectrum of disease formerly divided into non-radiographic vs. radiographic axial SpA.
🔗
buff.ly/3CISx4v
#AnkylosingSpondylitis #nrAxSpA
@asintfed.bsky.social
told @gohealio.bsky.social
🔗
buff.ly/3CISx4v
#AnkylosingSpondylitis #nrAxSpA
@asintfed.bsky.social
told @gohealio.bsky.social