Defining Ankylosing Spondylitis

Hi again! It’s March – still Autoimmune Disease Awareness Month!

There are SO MANY different autoimmune diseases that we can raise awareness for this month. Since I have Ankylosing Spondylitis (AS), I want take a minute to really explain what it is and how it effects people. I also want to let you know how I explain AS when someone asks me about it, because I definitely don’t always have time/desire to go into a full-blown, technical, medical explanation 🙂

So here is the formal medical information:

AS is a form of autoimmune (causing the body’s natural immune system to create antibodies that attack normal body tissue) arthritis (joint inflammation) that primarily impacts the spine. AS Causes inflammation of the spinal joints, which causes severe pain and can eventually lead to fusion of the spine- called ankylosis.

AS specifically causes inflammation of the entheses, which are the points where ligaments and tendons attach to bone. As the body is constantly trying to repair these inflamed entheses of the spine, scar tissue forms. The build up of this scar tissue is what can eventually lead to spinal fusion. The fully -fused spine is very brittle and resembles a bamboo stem, leading people to call progressive AS “bamboo spine.”

Full-fusion can often lead to a forward-curved spine, which some say causes a person’s posture to resemble a question mark. It is also very brittle, and more prone to breaks and fractures.

Possible complications associated with AS include: achilles tendonitis, plantar fasciitis, hip pain, shoulder pain, chest pain and tightness, jaw inflammation causing difficulty talking and eating, fatigue, and iritis or uveitis. AS can also impact joints other than the hips and spine (knees, wrists, etc.)

*With my AS I get achilles tendonitis, fatigue, uveitis, and hip and back pain.

Fun fact: have you ever heard of an ankylosaurus? If my AS has an animal associated with it I can definitely see why it would be this one…

Unfortunately there is no definite test to diagnose ankylosing spondylitis. The most trusted diagnostics are MRI or x-ray images of the sacroiliac (SI) joints- fusion here is the trademark of AS. Doctors also often test for the HLA-B27 gene. It is important to note that not everyone with AS will test positive for the gene, and the gene does not always indicate AS.

*I do happen to be HLA-B27 positive

While there is currently no cure for AS, a variety of treatments can help to slow progression and minimize pain. NSAIDs (anti-inflammatory medications like Advil and Tylenol) are usually recommended to help reduce the pain from inflammation. Ice and heat can also be helpful. Most doctors will also encourage movement and exercise to help keep joints mobile. Dietary changes may also help in managing AS symptoms.

More extensive treatment options include biologic medications like Humira, Enbrel, Simponi, or Remicade. These drugs work by blocking the sources of inflammation, tumor necrosis factor (TNF), in the body. Unfortunately, these drugs have many side effects and are known to suppress the bodies natural immune system.

Get all that?

While it’s important to understand what AS actually is, obviously it would be a pain to try and go through this entire explanation every time someone asks about my AS… so this is what I usually tell them:

“I have Ankylosing Spondylitis- a type of autoimmune arthritis that causes inflammation in my hips and spine.”

And if they want to hear more…

“Right now my SI joints, the joints in my hips, are fused together, and without intervention my AS would cause my entire spine to fuse together within 10 years. Thankfully I’m taking a medication that is working for me and slowing the progression of the disease, and I will probably have to be on it for the rest of my life.”

And finally, if they STILL want to hear more…

“I have to give myself injections in my thigh every other week, and there is no gurantee that this treatment will work forever. I still have occassional pain, achilles tendonitis, and feel fatigue despite being on medication.”

Usually the first or second blurb is enough for people to give me the “oh wow, that sucks and I’m not really sure how else to respond” face. But talking about it feels good- and teaching people about a fairly common disease that they had never previously heard of is exactly what I hope to continue doing.

If I find someone who is REALLY interested in here more, these are some quick facts I like to share about AS, other autoimmune diseases, and arthritis:

–The typical age of onset for AS is 17-45

–The CDC estimates that 2.7 million adults in the U.S. have a form of spondyloarthritis- it is not rare

–AS is actually more prevalent that MS, cystic fibrosis, and Lou Gehrig’s disease COMBINED

–More than half of people with AS say they were not diagnosed until at least 5 years after the began experiencing symptoms

Thanks for reading 🙂 Happy #ADAM!

Sources: Arthritis Foundation and Spondylitis Association of America