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RAWR! 🦖 World AS Day — Living with Ankylosing Spondylitis in Bear Territory
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RAWR! 🦖🦕
That's Lilah doing her best ankylosaurus impression — and honestly she nailed it. Every year on World AS Day, Norah and Lilah suit up in their dinosaur costumes to help me bring awareness to the disease that shapes our daily life here in Bear Territory. And this year, we are sharing that story more fully — because awareness matters, because understanding matters and because if even one person reads this and recognizes their own symptoms or feels a little less alone, then every single word is worth it. 🐾
🦴 What is Ankylosing Spondylitis?
Ankylosing Spondylitis — pronounced ank-kih-low-sing spon-dill-eye-tiss and known as AS — is a chronic and systemic inflammatory autoimmune disease. It primarily affects the spine and major joints, although it can involve many other parts of the body as well.
AS causes inflammation of the spinal joints and vertebrae that can lead to severe, chronic pain and discomfort. In advanced cases, this inflammation leads to ankylosis — the formation of new bone in the spine — causing sections of the spine to fuse together in fixed, immobile positions. This is sometimes called "bamboo spine" and it is exactly as serious as it sounds.
AS is not just common arthritis. It is a systemic disease — meaning it can affect the entire body — and it is frequently misunderstood, misdiagnosed or dismissed for years before patients receive the correct diagnosis. At least 1.7 million adults in the US have AS, while 3.2 million have some form of axial spondyloarthritis.
AS does not discriminate. It can affect any gender, any ethnicity and any age — even children. Although symptoms usually start to appear between the ages of 17 and 45, they can occur at any stage in life.
🦴 My Journey
I was diagnosed with AS in 2019 at 42 years in age after the disease became aggressively prominent and unbearable rather quickly. But looking back, I can see AS symptoms in my early-mid 20s. When AS took over my life, it drastically changed my whole life — I had to go on disability, sell my home and many more life altering things happened because AS made it impossible to maintain my life as I knew it. AS stole and then restructured my life. But if it wasn’t for AS, there’s a good possibility that I wouldn't have my bears so I can’t be too mad at it!
I am five inches shorter than I used to be. My spine has compressed and has naturally fused in multiple areas — including my neck. This means my neck and head do not move — at all. Not even a little bit. I cannot nod yes or no. I cannot look to the right or left without turning my whole body. I cannot tilt my head back to take a drink from a glass. It also prevents me from reaching above my head or even reaching the back of my head. I can lose my balance when walking or standing. Things that most people do instinctively and effortlessly every single moment of every single day are simply not possible for me anymore or extremely challenging.
Unlike those whose AS remains less visible — mine is not invisible. You can see the changes in my spine. You can see how my body has been reshaped by this disease. It is there, visible and real, every single day.
Since AS is an autoimmune disease, I take immune suppressing medication to control it. This means my immune system is intentionally weakened — making me significantly more susceptible to illness and infection which is why I get sick so often and so severely. A common cold can put me in the hospital if I’m not careful.
It took years to find the right medication that actually helps me. Years of trying different treatments, adjusting doses, sitting through infusion treatments, all failing and then having to start the search over again. It can take such a toll on you. Thankfully, I have finally found a medication that significantly helps my everyday life be so much better than it was — but that medication can stop working at any time. I have to stop taking it when I get sick, and it may not work the next time I do take it. I was recently reminded just how bad this disease can be when I had to be off my medication for seven weeks while I was sick. I so badly do not want to have to return to that life- to the old me that had to deal with that level of pain 24/7 with no relief to be found..
My body has issues that I shouldn't have to face until many years from now, but I manage what I can do each day very carefully. My weeks are a balance of busy days and much needed recovery days. I keep my stress levels as low as possible (the not my circus, not my monkeys mentality is strong here), and I try to listen to my body (I’m still not great at that part) — but it is one of the most important things I can do for my health.
🐻 Where Norah and Lilah Come In
Ankylosing Spondylitis is part of the reason I can’t pursue the therapy dog work I dreamed of possibly doing with Norah- it’s just not something I am physically able to do- that dream had to be reshaped. But Norah and Lilah helped me to find another way to help and encourage people- The Bernie Bears exists in the world because of what AS took away but also what it gave me and what it forced me to do differently.
I am managing something significant with my health almost every day — alongside millions of others living with AS and many other chronic diseases worldwide, but Norah and Lilah don't know that. They just know that I need them; and they need me: and they show up for that every single day without question.
If you know The Bernie Bears, then you already know that Norah and Lilah are not just dogs. They are not just pets. They take up a big part of my heart — and on the hardest days they are my reason to keep moving forward. They help keep my stress levels low. They give me a reason to get up every morning even when I question what I can do that day. I know they need me. They are happy to just cuddle all day if that’s what I need or to be fun and active that day. They just go with the flow and are there for whatever each hour or day may bring. They make me laugh every single day without fail — whether it's Norah announcing her opinions loudly to anyone who will listen, Lilah enforcing the rules and her paw upon everyone else or both of them dressing up in tutus on Tuesdays or dinosaur costumes for World AS Day like the magnificent, beautiful, dramatic bears they are. 🦖
🦴 AS is Hard to Diagnose
This part matters — because the road to diagnosis is often a long and frustrating one.
There is no single positive or negative test for AS. There is no blood test that definitively says "yes you have this" or "no you don't." Diagnosis is a culmination of many factors — a thorough physical exam, individual medical history, family history, imaging including X-rays and MRI scans and blood work.
Blood can be tested for the HLA-B27 gene — but not everyone who has the genetic marker has ankylosing spondylitis. And some who don't have the HLA-B27 gene do have AS.
This is one of the most important and misunderstood facts about AS. The HLA-B27 genetic marker is associated with AS and the disease does have hereditary links — but having the marker does not mean you will develop AS, and not having the marker does not mean you are safe from it. I do have the genetic marker for AS but no one else in my family has been diagnosed with AS. We didn’t know it, but the marker was there, waiting.
Changes that appear on X-ray might take years to develop — early disease might not show on X-ray images at all. This means people can be dismissed, misdiagnosed or told their pain is something else entirely for years before they receive the correct diagnosis. This is unacceptable and it is exactly why awareness matters so much. It used to be called a man’s disease but now more women are diagnosed with it than men thanks to awareness of the disease.
Most people have never heard of AS but it is more common than many diseases you have heard of and that needs to change. Doctors need to be more aware of it so that they can help people manage the disease before it restructures or controls the whole life of the person with the disease.
🦴 AS Symptoms — What to Watch For
Early symptoms of ankylosing spondylitis might include back pain and stiffness, especially in the lower back and hips — often worse in the morning or after periods of inactivity. This is a key distinguishing feature of AS — the pain tends to improve with movement and worsen with rest, which is the opposite of mechanical back pain.
Other symptoms can include:
🦴 Neck pain and stiffness 🦴 Fatigue — sometimes severe and debilitating 🦴 Pain and swelling in other joints including shoulders, hips, knees and heels 🦴 Eye inflammation known as uveitis — which can cause sudden eye pain, redness, light sensitivity and blurry vision 🦴 Skin rashes 🦴 Stomach pain and bowel inflammation 🦴 Difficulty taking deep breaths if the chest joints are affected 🦴 Pain and swelling in the tendons and joint bones, known as enthesitis.
The severity of AS varies greatly from person to person. Some may experience only intermittent back pain and discomfort, while others experience severe pain and stiffness over multiple areas of the body for long periods of time. The inflammation caused by AS leads to the fusion of joints and vertebrae. AS can be debilitating and lead to disability.
🦴 There is No Cure for AS — But There is Hope
Currently there is no known cure for AS — but there are treatments and medications available to reduce symptoms and manage pain.
Treatment typically involves a combination of medication — including anti-inflammatory drugs, biologic medications and newer JAK inhibitors — along with physical therapy, exercise and lifestyle management. The goals of treatment are to relieve symptoms, help maintain proper posture, flexibility and strength and halt or slow the progression of the disease.
Early diagnosis and early treatment make a significant difference. The sooner AS is identified and managed the better the outcomes tend to be. This is why awareness is so critical — because every year that someone goes undiagnosed is a year the disease progresses unchecked.
🦴 What I Want You to Know
If you or someone you love has been experiencing unexplained inflammatory back pain — pain that is worse in the morning or after rest, that improves with movement, accompanied by stiffness, fatigue or other joint issues — please talk to a doctor and ask specifically about AS and axial spondyloarthritis. Push for answers. Advocate for yourself. The road to diagnosis can be long but it is worth fighting for.
If you are already living with AS — I see you. I really, truly see you. You are not alone in this. Not today and not any day. 🐾
And if you know someone living with AS — or any other chronic disease - please be patient with them. Please understand that what you can see on the outside rarely tells the full story of what they are managing on the inside, even if it is glaringly visible, there’s always more to the story. And don’t stare or treat them like they can’t do anything for themselves. Ask if there is anything you can do for them or just kindly ask about their day or their pain levels that day/ week. Understanding, listening and just treating them like a fellow human goes a long way.
OH — and if you are or know a doctor, make sure they are aware of this awful disease. I was passed from doctor to doctor and specialist to specialist who didn’t know what to do with me. It was an orthopedic doctor that was aware and ordered the right blood test and got me to a rheumatologist who finally provided answers and began to help me!
Remember to share your hugs — they have the power to save a life! 🐾
Bear hugs from us to you, Momma🐻, Norah🐻 & Lilah🐻
🦴 Resources
For more information about Ankylosing Spondylitis please visit:
🐾 Spondylitis Association of America — spondylitis.org 🐾 National Axial Spondyloarthritis Society — nass.co.uk 🐾 Mayo Clinic AS Overview — mayoclinic.org