health update
Alright, I will have a fun time updating my FAQ, since what I was scared about here and lowkey talked about here is true: I also seem to have Ankylosing Spondylitis (Bechterew’s disease), a type of spondyloarthritis. It’s actually likely the reason why I also have Crohn’s disease, as those are linked. Many people with AS develop an inflammatory bowel disease and vice versa. It’s a condition where your body keeps attacking your spine and joints until they form bone and fuse, becoming stiff and inflexible.
I was suffering a lot with my back and specific joints as well as my flexibility for almost my whole life. I already had these very same symptoms when I was 12 and I am now 29. All this time no one could help me, my only luck this year was both finally having good doctors and an intense flareup of both conditions. Previously they just tested for rheumatoid arthritis every couple years and that was always negative.
The most common symptoms for this are joint pain (especially the lower thumb joint, shoulders, elbows, knees etc.), inflammatory pain and stiffness in areas of the spine, heel inflammation and pain in the sacroiliac joint - this is the joint connecting your pelvis to the spine. Then bowel issues, fatigue, uveitis and psoriasis show up as well. If you experience these issues, please contact a doctor to get an MRI to see the inflammation or fusion, and an HLA-B27 test. HLA-B27 is a polymorphic form of the HLA-B molecule, a human gene involved in the immune system. Variations in it are said to be the reason why the immune system may be unable to differentiate between own tissues and threats, which can cause autoimmune diseases. A large % of AS patients test positive for B27, which raises the risk for having/developing multiple autoimmune diseases.
In my case, I checked all of the symptoms strongly already and had a high Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) (that’s a form I had to fill out about pain, fatigue etc.), so we just did some physical tests and ultrasounds of some particularly hurtful joints, then the HLA-B27 test.
I’m lucky that my current medication treats both. Other than that, all I can do is stay active and do my usual stretches to keep my mobility, even if it hurts.
I used to be so scared of this being positive but now that it happened, I feel nothing. It’s been almost 2 weeks now. Objectively, it’s sad I had to go undiagnosed for so long. I could have gotten treatment sooner. I remember being in so much pain during class trips or how often I was unable to walk due to inflamed heels. All that back pain, the psoriasis…
It is what it is, I guess. I had 17 years to get used to it. I remember my goal for 2024 was to finally treat my health issues and fight for something to happen; I planned some doctors visits in the new year back in December already. I didn’t think it would turn out this bad, but at least it came true. I saw this one TV show recently where someone said “It didn’t happen to me, it happened for me” and it’s very relatable. I feel like I finally have everything out of my way to enjoy life… it took almost all of my 20s to sort everything out - moving out from a bad home, finding a stable job with a good income, finding a great partner and where my passion is (data protection law), and finally getting the diagnoses I need. Now it will be much easier to enjoy my upcoming 30’s. :)
Published 05 Dec, 2024