Let's Talk About Ankylosing Spondylitis
We’ve got the doctor-approved scoop on causes, symptoms, treatments, and a jillion other facts and tips that can make life with AS easier.
Whether you’ve just been diagnosed with or worry you could have ankylosing spondylitis, you’re probably nervous, confused, and maybe a little scared. That’s normal, and everyone featured on HealthCentral with a chronic illness felt like you do now. But we—and they—are here for you. Read on to learn about the realities and challenges you’ll face with this condition, as well as the best treatments, helpful lifestyle changes, where and how to find your ankylosing spondylitis (AS) community, and all the crucial information to help you not just manage this condition—but thrive with it. We’re sure you’ve got a lot of questions … and we’ve got the answers you need.
Our Pro Panel
We went to some of the nation’s top experts on AS to bring you the most up-to-date information possible.
Anca Askanase, M.D.
Rheumatologist, Director of Rheumatology Clinical Trials
Columbia University Medical Center
New York City
Howard Blumstein, M.D.
Rheumatologist, Clinical Professor of Medicine
Stony Brook University
Jonathan Greer, M.D.
Rheumatologist, Assistant Clinical Professor of Medicine
University of Miami
Palm Beach, FL
No, there is no cure for AS. It’s a chronic, lifelong disease. That said, there are a number of effective treatments and many people have mild to moderate disease that doesn’t progress any further. Bottom line: With proper treatment, you can live a long, productive, and relatively pain-free life, despite having AS.
The very best treatment may well be regular exercise. It can help reduce pain, stiffness, and fatigue, and improve your posture and breathing capacity, all while helping your spine and other affected joints stay flexible. Bonus: There aren’t any negative side effects—it’s all good!
It’s more common than you might think. The Spondylitis Association of America estimates that 1 out of every 200 adults in the U.S., or 1.1 million people, has ankylosing spondylitis.
There is very little research into the role of diet in AS, but it is known that consuming a lot of sugar, unhealthy fats, and processed foods contributes to inflammation and dysbiosis—an imbalance in gut bacteria—both of which may make your symptoms worse. For that reason, most experts recommend following the anti-inflammatory Mediterranean diet, which emphasizes whole grains, vegetables, fruits, healthy fats, lean meats, fish, beans, and eggs. Sticking to a healthy diet along with exercise will also help keep your weight under control, which is important because lugging around excess poundage puts extra pressure on your already stressed joints.
What Is Ankylosing Spondylitis, Anyway?
The first thing you need to know about ankylosing spondylitis is how the heck to say it. Even though it looks like one of those wizarding commands from a Harry Potter book, it’s a lot harder to wrap your tongue around than expecto patronum!
Fortunately, it’s pronounced pretty much like it looks: ank-eye-low-sing spon-dill-eye-tiss. We’re going to make it easier on you (and us!) by mostly referring to this form of chronic, inflammatory arthritis that primarily affects the spine as AS.
With that out of the way, now we can talk details: The first sign of AS is usually lower back pain and stiffness that typically begins in adolescence or the early adult years. The discomfort gradually worsens as the small interlocking bones of the spine (the vertebrae) fuse together, limiting back movement.
Ankylosis is the term used to describe this progressive bony fusion. Spondylitis refers to inflammation in the joints of the vertebrae. AS is part of a family of six diseases with similar symptoms known as spondyloarthritis (SpA), or spondylitis—but we’ll get more into that in just a moment.
Before we do, ready to continue with the vocab lesson?
The first joints to become inflamed are usually the sacroiliac (SI) joints between the pelvic bones (the ilia) and the base of the spine (the sacrum)—a condition known as sacroiliitis.
From there, the inflammation can gradually spread up the spine into the vertebrae.
The recurring process of healing and repair that takes place after inflammation leads to extra bone formation in the spine. When this occurs repeatedly over many years, the additional bone mass fuses with the ligaments and joints, restricting movement. It’s also possible for the spine to permanently fuse in a forward-curving position, leading to stooped posture, although new treatment advances have made this much less likely.
The inflammation can affect other joints—including the hips, shoulders, knees, and small joints of the hands and feet—and cause additional complications.
In about 40% of patients, AS can lead to a type of acute eye inflammation known as iritis (also referred to as uveitis).
Rarely, the heart can be affected, as well. Inflammation around the heart can sometimes lead to high blood pressure (HBP) and other cardiovascular conditions, according to the Spondylitis Association of America. However, this is not common, affecting 2% to 10% of people with AS.
Other parts of the body may be affected, too. Inflammation in the lungs can lead to pain when breathing deeply. And, odd as it may sound, AS can also mess with your bowels and digestive system. While researchers are still working to understand why, inflammation can spread to the gastrointestinal tract, leading to bloating, diarrhea, and other GI symptoms. In fact, frequent gastrointestinal infections are a known risk factor for AS. And, because there is genetic overlap between AS and inflammatory bowel disease (IBD), about 10% of AS patients have both conditions.
Here's what else you need to know: AS is not your grandmother’s arthritis. Traditional arthritis that develops with age is known as osteoarthritis and is caused by wear and tear—the cartilage that cushions the bones breaks down, resulting in joint pain.
AS develops at much younger ages—usually in the teens and 20s—and is caused by chronic inflammation, making it a closer cousin to the autoimmune disease rheumatoid arthritis (RA). In both AS and RA, pain and stiffness are at their worst in the morning and improve over the course of the day with movement and exercise. Conversely, osteoarthritis requires rest and gets worse with movement. Recognizing these symptom differences is key to diagnosing AS.
What Causes AS in the First Place?
Although frequently included on lists of autoimmune diseases, AS is a bit different. You probably know that an autoimmune disease is a condition in which the immune system mistakes a part of your body (such as the joints, skin, or nervous system) for an invader and attacks it.
In most autoimmune diseases, proteins called autoantibodies attack the healthy cells. But in a few immune-related conditions, including AS and Crohn’s disease (an inflammatory bowel disease, or IBD), there are no autoantibodies produced, so when describing this condition many experts prefer the term auto-inflammatory.
Another key difference is that 80% of patients with traditional autoimmune disorders are female, which is not the case with AS. It was previously believed that AS affects men about twice as often as women, but there is increasing evidence that women may be underdiagnosed—perhaps because they often have milder symptoms and choose to “soldier on”—and the true ratio of men to women might be closer to 1:1.
It’s safe to say, though, that AS certainly isn’t a female-dominated disease. AS is typically diagnosed earlier in men and strikes them harder than women.
Like other autoimmune conditions, the causes of ankylosing spondylitis are believed to be multi-factorial, meaning there is likely more than one trigger at work. However, AS does seem to have a strong genetic link.
AS and the HLA-B27 Gene
Researchers have identified a gene known as HLA-B27 that may account for about a third of the risk for developing AS.
The HLA-B27 gene is found in 90% of Caucasians with AS, whereas only 8% of Caucasians without AS have this gene.
In other populations, such as African-American or Asian, the presence of the HLA-B27 gene in people with AS is closer to 60%. Although having the HLA-B27 gene is considered a risk factor for AS, that doesn’t mean you’re doomed if you do have it. In fact, about 80% of children who inherit the HLA-B27 gene from a parent with AS never develop the condition themselves.
So, why do researchers believe the gene is turned “on” in some populations and not in others? Apparently, variations in other genes that also play an important role in the immune system have been observed in AS patients—but it’s not yet known how they (or HLA-B27) may affect someone’s risk.
Researchers do have some theories though (they'd be out of business if they didn't). One is that the HLA-B27 gene may allow certain types of bacteria to thrive and overstay their welcome—possibly resulting in the type of inflammation that can lead to new bone formation in the spine, where it would not normally exist. Another possibility is that HLA-B27 may interact with other proteins, altering the body’s immune response.
The gut’s microbiome—which you can think of as a sophisticated, symbiotic ecosystem of bacteria that helps your body maintain good health—also has researchers hypothesizing about its role in AS.
Two recent studies support the idea that alterations in your microbiome may fuel the inflammation that contributes to AS, but more research is needed to zero in on what type of bacterial imbalance could be to blame. A related theory is that AS may begin when the defense mechanisms of the intestines break down, sending bacteria into the bloodstream and triggering an exaggerated immune response. Given the connection to conditions like Crohn's disease, this particular theory makes a lot of sense. Stay tuned for the confirmation though.
Do I Have Ankylosing Spondylitis Symptoms?
Know anyone else with back pain? Um, just about everybody, right? It’s easy to pop an OTC pain-reliever and get on with life. That may be especially true for women, who tend to have a milder forms of AS, which makes it easier to brush symptoms aside and carry on.
Male or female, there are some differences you can learn to recognize that separate AS from typical (a.k.a. mechanical) back pain, which is typically due to injury or damage, such as slipped or herniated discs. For starters, AS symptoms usually appear at younger ages. It’s possible to be diagnosed with AS at any age, but it most commonly appears between the ages of 17 and 45, and especially in the teens and 20s. And while a common backache usually occurs in short, painful spells, the pain from AS is likely to be long-lasting, persisting for three months, or more, at a time.
The course of AS can vary greatly from person to person. As with other autoimmune conditions, AS patients may experience flares—periods when their symptoms get worse—or remission, when there is little to no disease activity and symptoms are mild or non-existent. You may have only some or many of the symptoms, depending on the severity of your disease.
Here are some early-stage clues:
You wake up with stiffness and pain in your lower back in the early morning that lasts at least 30 minutes and then improves throughout the day or with physical activity. Mechanical back pan, on the other hand, gets worse with activity, not better.
The pain is usually dull and diffuse, rather than localized and sharp like Mechanical or non-inflammatory back pain, on the other hand, generally gets worse with activity not better.
You may also have pain in one or both buttocks and sometimes the backs of the thighs, which can be dull or sharp and shooting. (We know, opposite sensations and similar to other forms of back pain. That's why you need to look at all the symptoms.)
The pain may start on one side, or alternate sides, but eventually is felt on both sides.
Dull back pain and stiffness may frequently wake you at night—and you’ll need to get up and move around to improve it. Mechanical back pain is less likely to wake you up, usually isn't chronic, and may benefit from some rest for healing.
You may also have neck, shoulder, hip or thigh pain that’s worse when you’re not active—like when you’ve been sitting at a desk for a while.
You may have pain, stiffness, and swelling in your knees or ankles.
You will likely be fatigued because the body is expending energy to deal with inflammation and may have a mild fever and loss of appetite. Anemia can result as well because inflammation limits the body’s ability to use iron to make enough healthy red blood cells.
Other symptoms you may experience include:
Soreness at the heel or in the arch of your foot
Pain and swelling in your finger or toe
Tenderness at the base of your pelvis, which can make sitting uncomfortable
Chest pain or tightness that comes on gradually and may cause tender ribs and shortness of breath after moderate activity. Coughing or sneezing may also hurt, making it difficult to take deep breaths.
GI issues including diarrhea, cramping, and abdominal pain. Up to 10% of people with AS also develop an IBD, such as Crohn’s disease and ulcerative colitis (UC).
Iritis or uveitis, which is inflammation of the eye. The first signs are usually eye pain, redness, and sensitivity to bright lights. If you experience these symptoms in one or both of your eyes, or if you have changes to your vision such as partial loss of sight, blurred vision, or floaters, get to an eye doctor as soon as possible.
When to See a Doctor
If you develop any of the above symptoms and they persist for three months, it’s time to find a rheumatologist, a medical doctor who treats musculoskeletal disease—those that affect the joints, muscles, tendons, ligaments, connective tissue, and bones—and systemic autoimmune conditions. Ask your primary care physician for a referral or check out the Spondylitis Association of America’s patient-recommended directory of rheumatologists.
How Is AS Diagnosed?
Joint pain can go hand-in-hand with many, many types of illnesses, which certainly complicates the situation. And as with most other autoimmune conditions, there is no one test that can confirm a diagnosis of AS in the early stages.
A thorough physical exam, imaging tests, your individual and family medical history, as well as blood work (including a test for the HLA-B27 gene) will all be used in making a diagnosis. As noted above, the first clues your doctor will look for are:
Onset before age 45, and especially in the late teens and 20s
Early morning stiffness and pain that improves with activity and gets worse with rest
Symptoms that persist for three months or more
Physical exam: Your doctor will apply pressure to check for pain and tenderness along the back, pelvic bones, sacroiliac joints, chest, and heels. You’ll be asked to move and bend in different directions to see how flexible your spine is, and to breathe deeply to check for stiffness in the ribs. Your doctor will also want to know about any history of eye inflammation, gastrointestinal issues, a family history of AS, and how much fatigue you’ve been experiencing.
Blood work: You’ll be tested for the HLA-B27 gene, which is a strong indicator of AS in Caucasians. Its presence is less likely in other ethnic groups, but having the gene is one more indicator to add to the symptoms and imaging evidence.
Blood work will also screen for certain inflammatory markers that may be higher than usual, including your:
erythrocyte sedimentation rate (ESR); red blood cells normally settle out of your blood slowly, but they settle at a faster rate when inflammation is occurring.
C-reactive protein levels; these proteins are pumped out of cells when there’s inflammation in the body.
Your blood work may also include tests for rheumatoid factor, which is an antibody associated with RA, as well as anti-nuclear antibodies, which occur in cases of lupus, to help rule out these inflammatory conditions.
Imaging: The hallmark of an AS diagnosis is inflammation in the SI (sacroiliac) joints—known as sacroillitis—and that’s something that will be visible on an X-ray of your pelvis and spine. The catch is that it can take years for this damage to show up on an X-ray, so signs of early disease are often not obvious even if you have symptoms.
Magnetic resonance imaging (MRI) provides a better picture but is much costlier. Depending on your insurance coverage, your doctor may opt for an MRI for further evidence, or, if AS is strongly suspected, begin initial treatment without X-ray evidence.
Classifying Your Diagnosis
Remember back at the beginning when we said AS is part of a family of diseases known as spondyloarthritis (SpA) or spondylitis? Here’s where things get tricky because it’s possible to have more than one.
First, let’s rundown the six diseases in the fam. They’re all a bit different but share the common feature of potentially causing back pain and stiffness.
Ankylosing Spondylitis (AS): Our main focus, and why you’re reading this now.
Enteropathic Arthritis (EnA): Inflammatory arthritis associated with IBD, including Crohn’s disease and UC. No one knows why some very unlucky people get both conditions, but it goes back to the microbiome hypothesis. It may be that the chronic intestinal inflammation that accompanies IBD damages the bowel, allowing bacteria to slip through the bowel wall and circulate through the bloodstream. The body's reaction to these bacteria may cause other problems, including inflammation in the joints and/or spine, skin sores, and inflammation of the eyes. This has not been confirmed by science, but right now it’s the best we’ve got.
Psoriatic Arthritis (PsA): Inflammatory arthritis often accompanied by the scaly skin rash known as psoriasis. Up to 30% of people with psoriasis go on to develop psoriatic arthritis. Usually (but not always) the psoriasis develops first, followed by arthritis.
Reactive Arthritis (ReA): This form of inflammatory arthritis is thought to occur as a reaction to an infection, often in the genitourinary or gastrointestinal tract. Unlike AS, it doesn’t usually affect the spine or sacroiliac joints.
Undifferentiated Spondyloarthritis (USpA): Patients with USpA have many of the same symptoms, but don’t fit neatly into any of the other types of spondyloarthritis.
Juvenile Spondyloarthritis (JSpA): This disease can look like any of the other types of spondyloarthritis. The difference is that symptoms begin before age 16.
Still with us? On top of that mouthful of conditions, there is a newer spondyloarthritis classification system you’ll also be hearing more about. It takes these six family member diseases and rolls them all into two distinct categories known as axial spondyloarthritis (AxSpA) and peripheral spondyloarthritis (pSpA).
AxSpA patients have inflammation centered in the spine and sacroiliac joints. People with AS, as well as those with reactive arthritis, enteropathic arthritis, psoriatic arthritis, and undifferentiated arthritis, may fit into the AxSpA category. In fact, many experts are now using the term axial spondyloarthritis instead of ankylosing spondylitis for AS.
Instead of the spine and sacroiliac joints, patients with pSpA have inflammation in other joints like the hands, wrists, elbows, shoulders, knees, ankles, and feet. Almost everyone with psoriatic arthritis fits into this group at some point, and those with reactive arthritis, enteropathic arthritis, and undifferentiated arthritis may fit into the pSpA category as well.
Now remember those X-rays we mentioned earlier that may or may not be helpful? Here’s where they come in. Axial spondyloarthritis patients—and if you have AS, we’re likely talking about you—are divided into two more categories:
Radiographic axSpA, which means the characteristic damage or fusing of AS can be seen on an X-ray
Non-radiographic axSpA, which means there is no characteristic damage or fusing of AS visible on an X-ray
People with AS fit in the radiographic axSpA category, while those with reactive arthritis, enteropathic arthritis, psoriatic arthritis, and undifferentiated arthritis may fit into either the radiographic or non-radiographic category. In other words, no matter how many other symptoms you may have, if you don’t have definitive damage apparent on an X-ray, you can’t officially be diagnosed with AS or axSpA.
An MRI gives a better look at active inflammation in the SI joints when an X-ray is negative, but this inflammation can also be due to other issues, such as heavy athletic activity. And while all AS patients go through the non-radiographic stage early in the disease, many in the non-radiographic axSpA category never go on to develop AS.
Studies have found rates of progression to AS ranging from 5% to 30% over a period of 2 to 30 years. Still, there is some evidence that the newest class of medication—known as biologics—may help prevent further damage to the spine, so a patient with non-radiographic axSpA will likely receive the same treatments.
What Are the Best Ankylosing Spondylitis Treatments?
Here’s some good news! There are first-line treatments for AS that are readily available and well-tolerated. They include:
Nonsteroidal Anti-inflammatories (NSAIDs)
There’s a good chance you’ve got these meds sitting in your bathroom cabinet already. OTC options such as Advil (ibuprofen), Aleve (naproxen), and aspirin are a frequently effective and inexpensive option for treating the pain and stiffness of AS.
Many patients periodically rely upon this approach for years before having to move on to something else. The one catch is that they may cause stomach upset and gastrointestinal issues, especially in higher doses.
Another class of NSAID known as COX-2 inhibitors, which includes the prescription medication Celebrex (Celecoxib), may reduce the risk of these GI side effects. Patients who have AS with IBD should not take NSAIDS, however, because they can aggravate IBD symptoms.
Usually thought of as a complementary therapy when it comes to chronic illness, exercise is a first-line treatment for AS. That’s because physical activity is key to loosening up the joints, relieving pain, and keeping your spine flexible.
Not just any exercise will do, however. The best choices are easy on your joints, and involve stretching, strengthening, and aerobic activity. Swimming is ideal for AS patients. So are bicycling, yoga, or Tai Chi.
Avoid high-impact sports like jogging or soccer, or sports with a higher risk of falling such as downhill skiing or horseback riding. Gentle but regular stretching exercises are also important. Ask your doctor about prescribing physical therapy when you’re first diagnosed to help you learn effective stretching exercises and proper technique, as well as ways to improve your posture.
When NSAIDs and exercise are not effective enough at controlling your symptoms, or the side effects of NSAIDs become too severe, your doctor may turn to this class of medication.
Biologics are created from antibodies of living organisms that are grown in a lab. They can be self-injected, which you can learn to do at home, or given as an infusion in your doctor’s office. There are two types of biologics. The first choice is usually a tumor-necrosis factor inhibitor (TNFi). TNFi biologics approved to treat AS include:
The second class of biologics you may be given (if a TNFi is not effective or you can’t tolerate the side effects) are known as IL-17 inhibitors. The two approved for treating AS are Cosentyx (secukinumab) and Taltz (ixekinumab).
Each biologic has its own set of side effects—the most common are an increased risk of infection (because they suppress the immune system), irritation (redness, swelling, pain) at the site of the injection or infusion, headache, fever, chills, hives, and other rashes—but the benefits often outweigh any risks. Biologics have been shown to be highly effective at treating arthritis of the spine and joints, as well as inflammation in the gut and eyes.
This class of medication, known as steroids for short, can be effective in relieving inflammation.
Steroids are not given orally, however, because they can produce systemic side effects that can be severe if taken long-term (more than three months), including high blood pressure, high blood sugar, osteoporosis, cataracts, and psychosis or other psychiatric symptoms.
Instead, they’re more likely to be given as an injection directly into inflamed joints for temporary pain relief during flares. Steroid injections are only used for peripheral joints such as the knees or the pelvis and generally aren't used in the spine, however.
There are two other older medications you may encounter, although neither is particularly effective at treating spinal arthritis. Both are known as disease-modifying anti-rheumatic drugs (DMARDs) and work to limit tissue damage from inflammation.
Rheumatrex (methotrexate), a chemotherapy drug
The verdict is mixed as far as their usefulness in treating AS, however. The Spondylitis Association of America only recommends their use in certain cases or when a biologic is not available or appropriate.
Surgery for AS
In all but the most extreme situations, spinal surgery is not used to treat AS because it’s such a high-risk procedure. Only in rare cases, surgery may be done to straighten a spine that has fused into a curved forward position because breathing is restricted.
In these situations, the surgeon will cut through the spine and reposition it into a straighter, up-and-down position. Metal rods, bars, wires, and screws are used to hold the repaired spine in place.
Some AS patients may eventually need joint replacement therapy—usually in the knees or hips—for severe damage that makes daily activities difficult. During this procedure, the surgeon removes the damaged joint and replaces it with one made from metal, plastic, or ceramics.
Does Ankylosing Spondylitis Have Serious Complications?
The most serious complication of AS is ankylosis itself, because a fused spine can severely limit mobility and result in breathing difficulties if the rib cage is also involved.
Chronic eye inflammation (iritis or uveitis) is another common complication, as is IBD. People with AS are also at increased risk for osteoporosis, because inflammation causes a loss of bone mineral, as well as heart attack and stroke.
The chronic inflammation at the base of the heart and around the aorta—the heart’s largest artery—limits its ability to carry sufficient amounts of blood to the rest of the body, leading to high blood pressure. The aorta may also become enlarged, changing the shape of the aortic valve and allowing blood to leak back into the heart.
We know this all sounds terrifying, which is why it's important to remember that many if not most of these complications can be prevented with your AS is treated.
What’s Life Like for People With AS?
There’s no question that living with an illness that causes chronic pain is tough, but there are many strategies to help make it more manageable.
Mornings: Getting out of bed is never easy, but it is significantly harder for people with AS. You’ll wake up very stiff and sore, and it can take up to several hours for your joints to loosen up again.
While daily exercise is important, it’s not likely that you’ll be able to go full-throttle until later in the day. Instead, start off with a warm shower or bath, followed by some gentle stretching exercises to get you moving.
Working: Most people with AS can continue to work, but adjustments often need to be made. Talk to your employer about starting later if you’re very slow to get moving in the early mornings, for instance.
If you have an office job, look for ways to build movement into your day. You may find a standing desk works best, or at least try to alternate standing and walking with sitting.
Doing simple stretching exercises throughout the day, or slipping out for a lunchtime yoga class, can also help. Physically demanding jobs can be a bigger challenge with AS if your mobility becomes limited. Talk to your employer about ways to expand your skills into other areas or consider a career change so that you can continue to work.
Sex life: Pain, stiffness, and fatigue can all do a number on your libido, but don’t give up! Finding ways to have sex will help you stay connected to your partner and improve your self-confidence.
Experiment with changes in position or timing—later in the day when you’re more flexible, for instance. Sitting on a firm chair with your partner standing or kneeling may all be more comfortable for you than lying down. Body pillows or foam bolsters can be used to support your joints during sex. Other types of intimacy like cuddling, massage, and using sex toys are always an option when you’re not up to doing more.
Pregnancy: Having a baby is also a “do.” There’s no evidence that AS affects fertility, although the medication sulfasalazine does reduce sperm count and should be stopped a few months before conception. And methotrexate can cause birth defects and death in a fetus, so it shouldn’t be taken during or months before pregnancy.
However, both meds are being used less frequently in AS treatment. NSAIDs are usually not recommended during pregnancy, but some biologics may be safe. They are sometimes used in pregnant women with AS because symptoms of AS can worsen during pregnancy, leading to other complications such as gestational diabetes, preeclampsia, infection, preterm labor, and preterm deliveries.
Studies show that most women with AS have normal pregnancies and healthy babies, although some research suggests they may be born small for gestational age. The one caveat to keep in mind: AS symptoms do not necessarily improve during pregnancy like they do with rheumatoid arthritis, and disease activity often increases in the first three months postpartum, but that may be due to lack of sleep, less exercise, and more stress.
Mental health: Because AS is frequently diagnosed at young ages, it can be a big blow to self-esteem and confidence just when you’re learning to become an adult. Being a teen, college student, or career newbie is stressful enough. You’re dealing with a painful condition and wondering how debilitating your life may become.
Seeing a mental health professional who has experience treating people with chronic illnesses and finding a support group locally or online can go a long way toward helping you adjust to and manage your diagnosis.
Where Can I Find AS Communities?
Top AS Instagrammers
Follow because: She has a way with words, wisdom, and witchcraft. (Intrigued yet?) Not only is she an award-winning essayist and poet, she’s also teaches ritual workshops at HausWitch in Salem, Mass., and founded Luna Luna Magazine—an online diary inspired by witches, dreamers, and creators. Lisa uses all that experience and passion to wax poetic about her life with AS on her Insta, often.
Follow because: Charis a blogger, mega-advocate, and model with AS who struts from hospital bed to NYFW, Burning Man, and even to The Hill to advocate for patients with AS. Self-identified as ‘they,’ Charis is risqué and raw, and while you’ll fawn over the badass portraits on their feed from Burning Man, you’ll also identify with their posts about life—occasionally spent in a wheelchair.
Follow because: When a therapist has a chronic condition (like AS) they have a certain grace about helping you wade through the roughage—they know you'll never fully escape it, so they help you cope right where you are, in the thick of it. That's what KJ does.
Follow because: Her bright and inspiring feed doesn’t instantly give way to the fact that she’s been living with AS for almost 10 years and must modify certain workouts due to killer back pain. And while she does sprinkle in the occasional mention of her living with this chronic condition, she chooses to push past it and show you what a little (or, a lot of) yoga, barre, and other low-impact workouts can do for your mind, body, and soul.
Amber Myers, @spondymom
Follow because: Somewhere, in the depths of Pinterest, there’s a quote that speaks right to your AS-soul—and self-proclaimed “SpondyMom” will find it. Her feed is riddled with memes and quotes that will have you nodding along, saying “HA!” out loud, or help you push past your painful days in sight of a better tomorrow.
Top AS-Related Podcasts & Shows
The Ankylosing Spondylitis Podcast. From diagnosis to complications, grieving your old life, finding a good rheumatologist, and the things that you’re so tired of hearing about as someone with AS, this podcast covers it all—and then some. All brought to you by Jayson Sacco, who’s been living with AS for more than 30 years, with the help of guests that include docs, orgs, and others living the AS life.
This AS Life Live! Brought to you by the Spondylitis Association of America (see Support Groups, below!), this interactive online talk show allows you to virtually sit down with others who are living with AS. So, bring your coffee and a cozy blanket, and pretend you’re on the couch with Imagine Dragon’s Dan Reynolds, the voice and interviewer behind This AS Life Live! (who lives with the condition), as he talks to others about managing pain and flares, clearing the mental hurdles, and more.
Top AS Support Groups and Non-Profits
Spondylitis Association of America. They do the research, speak on your behalf on The Hill, and introduce you to others like you. Aside from their message boards and forums, this nonprofit also brings you face-to-face with others who are living with AS, simply by clicking on their interactive map.
Walk AS One. Fueled completely by volunteers, this nonprofit both talks the talk and walks the walk. It started as an annual charity campaign to raise awareness (and funds) for AS, and now serves the community year-round with one simple motivation: walking. Since putting one foot in front of the other is known to have great health benefits (especially for those with AS), and it’s one of the simplest things you can do, they urge you to walk more, log your steps, raise funds along the way, and contribute to their 10-year goal of collecting enough steps to get to Mars. With just over 300 billion steps to go, give ‘em a hand—or two legs—why don’t ya?
Ankylosing Spondylitis on Reddit. The ultimate, never-ending, no holds barred, candid forum for living with AS, managing it, and venting about life with the condition. While Reddit looks as ancient as the internet gets, their threads are pretty thought-provoking and current in tone. For every topic that you know about and can chime in on (like which specialist to see during a flare), you’ll find five others that will educate you (like whether alcohol and AS can ever be friends).
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The Role of Exercise: Spondylitis Association of America. (2018). “The Role of Exercise.” spondylitis.org/LinkClick.aspx?fileticket=fo_RrqLaNaQ%3d&portalid=0
AS in Women: Spondylitis Association of America. (2019). “AxSpA in Women.” spondylitis.org/LinkClick.aspx?fileticket=6SxRAb3C1Xw%3d&portalid=0
AS Treatment: Spondylitis Association of America. (2019). “2019 Axial Spondyloarthritis Treatment Recommendations.” spondylitis.org/LinkClick.aspx?fileticket=9hYiqr8DZiQ%3d&portalid=0
Iritis: Spondylitis Association of America. (2019). “Iritis.” spondylitis.org/LinkClick.aspx?fileticket=iXsIGqKZzbU%3d&portalid=0
Recent AS Therapies and Discoveries: F1000 Research. (2018). “Recent advances in ankylosing spondylitis: understanding the disease and management.” f1000research.com/articles/7-1512
Genetics and AS: Medscape. (2019). “What is the role of genetics in the etiology of ankylosing spondylitis (AS)?” medscape.com/answers/332945-70045/what-is-the-role-of-genetics-in-the-etiology-of-ankylosing-spondylitis-as
Combining NSAIDs and Biologics to Treat AS: American College of Rheumatology. (2016). “Combination of NSAIDs and TNF-inhibitors shows benefit for ankylosing spondylitis.” sciencedaily.com/releases/2016/11/161113154759.htm
IBD and AS: John Wiley & Sons, Inc. (2007). “Inflammatory bowel disease genetically linked to arthritis (ankylosing spondylitis).” sciencedaily.com/releases/2007/07/070730092435.htm