Q and A About My Disease, Ankylosing Spondylitis

Q: So, you have a disease called ankylosing spondylitis, which I definitely don't know how to pronounce. What the hell is that?

A: Haha, it's pronounced: AN-KUH-LOH-SING SPON-DILL-EYE-TIS.

It's a degenerative inflammatory disease that is mediated by the immune system and primarily affects my spine, which means the disease is inflammatory in nature and may (or likely will) get progressively worse. The inflammation (which causes pain and stiffness) causes my vertebrae to fuse together (where normal people have space between their vertebrae). This can cause a hunched-over position over time or lack of mobility. It's SUPER FUN.

Q: Does it have other symptoms, or is it just your spine?

A: LOL. I wish it was just my spine. Remember how I said it primarily affects my spine? It also affects my eyes (eye inflammation — called uveitis — that has caused vision damage + cataracts from medication in my 20s!).

For me, it also causes — get ready for this list — hip pain and immobility (seriously, no more splits for me!), sacroiliac and pelvic pain (as if I'm glued together at the waist), widespread joint pain (yep, this includes knees, hands, toes, my shoulders).

I also get something called costochondritis, which is chest ligament inflammation (this feels sort of like if you have an anxiety or panic attack—the pressure). If my spine is inflamed enough, I'll get tingly patches from nerve compression. Fatigue and brain fog (forgetful, unclear thinking) is by far my most common symptoms even when I'm not actively in pain.

AS also causes me inflammatory bowel issues and skin rashes like psoriasis (psoriatic arthritis is actually sort of a "sister" disease to AS), which I get from time to time. My psoriasis is common when I'm under stress.

For many, foot issues, heart inflammation, restricted breathing and lung issues, as well as neurological complications.  Basically, AS affects pretty much everything, but not usually all at once for me. 

Q: So how did you get it? Do you inherit it? Can it go away?

A: There is no cure for AS, so I'll always have it. Booo! However, people totally go into "remission" or periods of low disease activity. I've been in great periods before, where I have almost full mobility and no pain.

There is a gene associated with AS: HLA-B27. Testing positive for the gene doesn't mean you'll get AS. While 90% of AS patients do have the HLA-B27 gene, most people with HLA-B27 don't get AS.

AS is hereditary, science tells us, although a parent only has a 20 percent chance of giving it to their offspring. My dad happens to have it, as does his sister. They think my grandmother did too. So, AS comes from one side of my family, although my mother weirdly also tested positive for the gene (and so far as we know does not have AS).

Science tells us that AS can be triggered — by trauma (like a fall) or by microbial gut infection. According to a 2019 study in Bone Research:

"Microbial infection acts as a triggering factor of the host innate immune system and AS development....The gut microbiome, including Lachnospiraceae, Veillonellaceae, Prevotellaceae, Porphyromonadaceae, and Bacteroidaceae, showed significant differences in AS patients compared with that in healthy controls....Klebsiella pneumoniae acts as an opportunistic pathogen in the normal human gut, and studies have suggested that it may be an exacerbating agent in the autoimmune process of AS."¹

I personally think I have AS because it runs in the family and because of gut infections that triggered it.

Q: So what is a bad day for you like? How do you treat it? What can people do?

A: A bad day is usually pain at around a 7-10 level (on the 1-10 scale), serious discomfort (especially when sleeping) or immobility and inability to work for a long period of time. I will probably be found stretching A LOT, gently working out, taking some pain medication, lathering up with icy hot, dosing up on CBD oil, and trying to eliminate stress — as stress compounds my symptoms by a lot.

I usually take an NSAID (like ibuprofen), but I have also been prescribed diclofenac. I used to be on a very serious injection medication called Humira (an immunosuppressant, which gave me the shingles actually!) but it wasn't working and was making me sick. I currently don't have insurance so I have to take cheaper medication and employ a bunch of lifestyle modifications: Better eating, working out consistently (which is great for AS), and stress management.

The best thing anyone can do is be patient with me, talk to me openly about my disease, and don't tell me to do a bunch of weird shit (like take wheatgrass shots or meditate) to "cure" myself. You don't need to solve anything. Just listen.