Here are links to the original articles I discuss in the podcast:
🔗 Yes, ankylosing spondylitis is found in women, too
🔗 Clinical Challenges: Early Disease in Axial Spondyloarthritis
🔗 Mick Mars Says He’s “Never Stopping” Despite Ankylosing Spondylitis
🔗 Rheumatism: Characteristics of a Group of Diseases
Click on a timestamp below and you’ll be taken to YouTube and the relevant section. To remain on this page, simply hover over the video timeline to find the various chapters. Either method works!
View the Transcript
In this episode, I want to round up some interesting news I’ve found in the past week or so. This episode will mainly relate to ankylosing spondylitis, the condition I have. It’s an autoimmune disease, and there’s a wealth of information out there. I sometimes find it useful to highlight information that discusses issues related to our condition or articulates things in a way I find helpful. So, let’s dive in.
The first thing I wanted to talk about was this article from Gemma Newman. It’s a really good piece that highlights something quite frustrating. It addresses the outdated notion that ankylosing spondylitis mainly or only affects males. Recent studies show that the difference in numbers between the sexes is much closer to parity than we once thought. It’s saddening to read about Gemma’s experience of going to a doctor and having her concerns almost dismissed because she is female. She was told that, as this is “a man’s disease”, she probably doesn’t have it. Even if the condition predominantly affected men, it’s appalling that we’re in a situation where such misconceptions persist. Even with a 99% male to 1% female ratio, we should not rule out the possibility in women. It’s shocking that Gemma had to endure this. However, it’s great that she’s highlighting this issue. For anyone who thinks they might have ankylosing spondylitis but faces outdated information stating it only affects men, please talk to your doctor and embark on the diagnosis journey. The sooner you find out, the quicker you can get relief and take action.
Gemma’s own sister went through similar issues. An important point to note is that ankylosing spondylitis can present differently in males and females. Gemma had mostly peripheral joint and enthesitis issues. Doctors, looking at her spine scans, told her she couldn’t have the condition. She was accused of imagining things or being hypochondriacal. This is a common experience for people with ankylosing spondylitis, something I went through as well. It took me 19 years to get a diagnosis. There’s no bad intention from the medical professionals, but we really need to change the narrative, as it’s damaging. People are not getting diagnosed, and more damage is being done to their joints and spine. We must dispel this myth and provide better information to medical professionals on the front line. So, thank you to Gemma for posting that article. It’s very helpful for people, and I’ll share a link to everything I’m discussing in the show notes.
The next article I wanted to discuss addresses clinical challenges in early disease in axial spondyloarthritis, the same as ankylosing spondylitis, broadly speaking, just phrased differently. I thought it was well written. Recent research suggests that sources of infections can include skin damage in patients with psoriasis and intestinal mucosa for patients with IBD manifestations. These are things that, if you have had ankylosing spondylitis for a long time or are aware of some of the biology, will make sense. A lot of people have comorbidities or other conditions alongside the more traditional back pain issues. These can include skin complaints like psoriasis or irritable bowel syndrome. There’s a spectrum of autoimmune and gut problems that can coexist with ankylosing spondylitis. The article discusses the idea that infection can trigger the disease to become more active or diagnosed.
Further, it talks about intestinal dysbiosis, an area of intense interest in the development of ankylosing spondylitis. Research into advanced stages of the condition has shown that the normal tight junctions between the epithelial cells of the intestine become loosened, resulting in a “leaky gut”. This allows pathogens and microbial antigens to enter the bloodstream, ultimately reaching the entheses where an immune reaction is triggered. This leads to the secretion of pro-inflammatory cytokines and upregulation of inflammatory pathways. I apologise if I mispronounced some of these terms. This is kind of like a buzzword bingo. It’s interesting because often when people think about autoimmune disease and the gut and diet, there’s sometimes a bit of eye-rolling, where they think the things we eat and the gut are very different from this sort of heavily labelled thing which must be treated with prescribed drugs. Medicine is amazing and often life-saving, and we should always listen to our doctors. But what this article describes is how intestinal dysbiosis, literally meaning that things are out of balance, can impact your health. If you have a healthy population balance, then your immune system isn’t going to get triggered, and things are going to be fine. The article then describes how things get more complicated, with gaps in the gut itself, leading to battles on many fronts for the immune system and crippling symptoms for people with autoimmune diseases like ankylosing spondylitis.
The next article I wanted to discuss is from Mick Mars, a musician from Mötley Crüe. I’ve been lucky enough to see the band a couple of times. Mick has been suffering from ankylosing spondylitis for a long time. He’s pushing through literal bone fusions in his body to get his art out there. For anyone with ankylosing spondylitis, this is very real. When you have a lot of inflammation, which we do, and it’s attacking the joints, particularly the sacroiliac joints, there’s scarring, and this scarring can turn into bone tissue. This is what Mick is referring to. He talks about how the disease is incredibly progressive for him, effectively turning him to bone. This is part of the condition. From my own experience and that of many others I’ve connected with, there are things we can do to mitigate this. I feel better than I have for 20 years. I feel sad reading about Mick’s struggle, but I don’t want anyone to give up hope. My experience and that of many others I’ve connected with suggest that there are incredible things we can do to help manage this, not just through strong medications with side effects. They can be used in conjunction with lifestyle modifications or on their own. I’m not taking any medication at all, and I promise you, I haven’t felt this good since I was 25. The reason I set up this podcast is to share everything I can, especially when there’s science-based evidence, but also the things I’m testing and keeping rigorous records on. I want to share that with you. If it helps, you can try these things yourself. It’s helpful to know that you’re not alone; many people are going through this, and it can affect anyone.
The final article I want to discuss provides some clarity on rheumatism, a characteristic of a group of diseases. Something often confusing for those unfamiliar with ankylosing spondylitis is that it’s a form of arthritis. I typically say I have a form of arthritis because everyone’s heard of that; they might have a grandmother who suffered from it, and they have this idea that it involves pain in the knuckles, for example. Yes, ankylosing spondylitis is a form of arthritis, but there are different forms. The article describes two classifications. It discusses osteoarthritis, the non-autoimmune version, and autoimmune arthritis, including rheumatoid arthritis and ankylosing spondylitis. Osteoarthritis is like wear and tear over time, causing damage, erosion, inflammation, and symptoms. Autoimmune arthritis is where the immune system attacks the areas, producing antibodies that attack joints, muscles, and connective tissue. This article offers clarity for those new to the condition or for loved ones wanting to understand how it works. One of the overarching ideas of Gut Heroes is to focus on the gut, where the majority of your immune system and microbiota are located. If we can address dysbiosis and rebalance the gut population, we can sometimes achieve incredible relief. This is a relatively new area of science, and I’m excited to share what I learn with you here.
I hope you found this useful. These were just a few pieces of information I recently picked up and wanted to share. I’ll be in touch soon.
Quick Shout Out to Any Autoimmune Warriors: If you have an autoimmune success story you’d like to share (and it doesn’t have to be ankylosing spondylitis) I’d love to hear from you. Please get in touch with me here. These stories are so unbelievably helpful and inspirational and yours could help another person on their journey. If you’re worried about being on screen please don’t worry, it can be audio only, or I can put together a written article with you and you can remain anonymous if you prefer.
Please feel free to leave any comments about this podcast below.