Did you know 350+ million people around the world live with rheumatic diseases?

We celebrate Autoimmune Disease Awareness Month in March. Then we celebrate Rheumatic Disease Awareness Month aka RDAM in September. I decided to write it when my autoimmune diseases, of which I have close to a dozen now, started getting much worse.

Regular readers of this site know that I write about my battle with AxSpA (which many people still refer to as Ankylosing Spondylitis), Psoriatic Arthritis, ME, and Antiphospholipid Syndrome (APS) which are all autoimmune diseases.

But I also have psoriasis, Sjögren’s syndrome, Raynaud’s syndrome/phenomenon, and many more.

Fibromyalgia is not an autoimmune disease, but researchers suspect it has an autoimmune component. It often overlaps with other autoimmune diseases.

As I mentioned in 2015 when I first started writing about this topic, autoimmune diseases love to party together. You never get just one!

These past three years, my body has become adept at attacking itself and creating havoc everywhere. Can you imagine living with a disease or diseases that constantly attacks your body, including your organs, tissues, and healthy cells?

What about a disease that can kill you in an instant and with no warning? (APS is, by far, my most immediately life-threatening diagnosis and it leaves me at high risk for heart attack, stroke, and blood clots.)

That’s my life!

An image of two women who suffer from rheumatic diseases on a purple banner that showcases Rheumatic Disease Awareness Month statistics. We use RDAM for a search hashtag.

Autoimmune Disease 101

I’ve fought a 15 year battle with multiple chronic autoimmune diseases that create chaos every single day of my life. I never get a day off. My body is always throwing something new and distressing at me, from crippling pain and fatigue to orthostatic intolerance, skin manifestations, hives, sticky blood, and mysterious bruises.

Not a single moment goes by with autoimmune disease that I’m not aware of what my body is doing to itself – to me. While you stand and move and enjoy your moment in whatever you are exploring, I’m stuck in my moment thinking about the crippling pain in my body and wondering if my legs will hold me up or if I will get light headed or nauseous from exerting energy.

That’s just a tiny glimpse into my world with autoimmune disease.

Here are some serious facts about autoimmune disease:

What is autoimmune disease?

Autoimmune diseases are complex and often misunderstood diseases and conditions. Essentially, your immune system sees your healthy cells and tissues in your body as invaders and it attacks – just like it is primed to do when you have the flu.

Unfortunately, there’s nothing there to attack. But ongoing inflammation is a silent killer and the goal is always to reduce inflammation and achieve some sort of balance or baseline.

Autoimmune diseases are prevalent. They impact millions of people worldwide.

Autoimmune diseases collectively affect millions of people worldwide, with estimates suggesting that around 50 million Americans alone have some form of autoimmune condition. All together, these diseases affect 5-9% of the population. Ask any patient and they will tell you their autoimmune disease(s) create a considerable personal health burden. It’s no wonder that autoimmune disease, at these rates, are also a huge public health burden as well.

These diseases can significantly impact a person’s quality of life, leading to chronic pain, disability, and in some cases, life-threatening complications.

These diseases are among the leading causes of death for young and middle-aged women.

Autoimmune diseases that we know of

Each of these diseases has its own unique symptoms, triggers, and treatment approaches. Axial Spondyloarthritis, Rheumatoid Arthritis, Lupus, Multiple Sclerosis, Type 1 Diabetes, and Hashimoto’s thyroiditis are all examples of autoimmune disease.

A list of autoimmune diseases on a purple background with a light purple table and a massive list of diseases.

I created a handy table of autoimmune diseases for my article and site. The research and data is from the team at the Autoimmune Institute. You can view their A-Z list and various links at: https://www.autoimmuneinstitute.org/resources/autoimmune-disease-list/. My autoimmune diseases are in bold on the chart.

Autoimmune diseases are hard to diagnose

Autoimmune diseases can be challenging to diagnose because their symptoms often overlap with those of other conditions.

This can lead to delays in getting an accurate diagnosis and appropriate treatment, which are crucial for managing these chronic conditions effectively.

Indicators that something is wrong is excessively high CRP and ESR blood tests.

It’s easy to come up with excuses when your mostly med resistant and difficult to treat inflammatory arthritis starts escalating.

Many people assume that axial spondyloarthritis is just bad arthritis. It’s not. It also affects your eyes, skin, organs, your vascular system, and your heart. AxSpA patients have a high risk for cardiovascular disease, not only because this type of arthritis attacks your immune system, but because it creates systemic inflammation that is extremely hard on your heart. This is why we patients document everything.

CRP is a blood test that measures inflammation in your body. For example, excessively high C-reactive protein levels result in symptoms that include:

*Severe headaches
*Fever
*Sweating, chills, or shaking
*Persistent retching or vomiting
*Persistent diarrhea
*Difficulty breathing
*Rapid heartbeat
*Hives or other rashes
*Body pain
*Stiffness or soreness
*Loss of consciousness

Banner for excessively high CRP levels. CRP is C-Reactive Protein. It's a blood marker that measures inflammation in your body.

RDAM2025 #RheumaticDiseaseAwarenessMonth

More than 80% of autoimmune disease happens in women

According to many studies submitted to the National Library of Medicine, “Women have up to a fourfold increase in risk for autoimmune disease compared to men. Many explanations have been proposed, including sex hormones, the X chromosome, microchimerism, environmental factors, and the microbiome.”^Source

Sex disparities disproportionately affect women compared to men. Many autoimmune diseases have a female-to-male ratio of 3:1 or even higher. The reasons for this are not fully understood but may involve hormonal, genetic, and environmental factors.

You might also be interested in:

My AS/AxSpA Story – My first autoimmune diagnosis in 2009
What is MECFS?
Visual Evidence of ‘Invisible Disease: People keep saying inflammatory arthritis is invisible, but it’s not.
Health Summits – Visit this section of my site to learn about patient reporting on health summits like ACR, the Spondy Summit, the Fibromyalgia Community Conference, and more

Genetics – Family history is a huge factor

Autoimmune diseases are not purely genetic. However, there is evidence of a genetic component to them. Individuals with a family history of autoimmune diseases may have a higher risk of developing these conditions themselves.

However, not everyone with a genetic predisposition will develop an autoimmune disease. This means that other factors, such as, environmental triggers, play a factor in developing autoimmune disease.

This author’s family has autoimmune disease everywhere. My brother died with sarcoidosis. It’s common for siblings to have various autoimmune diseases, and my sister is no exception. She has Ulcerative Colitis. My dad has Graves and my mom has vasculitis.

Meanwhile, my grandmothers on both sides of the family had forms of inflammatory arthritis, as do many of my aunts.

Treatments are challenging, but evolving all the time

Treatment for autoimmune diseases often involves managing symptoms and suppressing the immune system to reduce inflammation and prevent further damage to tissues and organs.

However, immune-suppressing medications can have side effects. They also increase the risk of infections and other complications. (I can tell you loads about infections and complications related to treatments that date back to over a decade.)

Disease symptoms fluctuate all the time

Anyone who knows me knows I struggle with this all the time. As soon as I get one under control, another one pops up and starts wreaking havoc.

Autoimmune diseases can cause symptoms that fluctuate over time, with periods of remission where symptoms improve and flare-ups where symptoms worsen.

This unpredictable nature of autoimmune conditions can make them challenging to manage and can significantly impact daily life.

My autoimmune diseases have stolen a beautiful and rich life that I built for myself. My quality of life now is quite low and unfortunately, I now know how I’ll die. APS has made sure of that.

The impact on mental health is huge

Living with an autoimmune disease takes a toll on mental health. FULL STOP.

Chronic pain, fatigue, uncertainty about the future, and the challenges of managing a complex medical condition can contribute to anxiety, depression, and other mental health issues in individuals with autoimmune diseases.

More autoimmune disease research and awareness is needed

Despite the prevalence and impact of autoimmune diseases, they are still not as widely understood or talked about compared to other medical conditions. More research, awareness, and support are needed to improve diagnosis, treatment options, and quality of life for people living with autoimmune diseases.

These facts highlight the complexities and challenges associated with autoimmune diseases, emphasizing the importance of ongoing research, education, and support for individuals affected by these conditions.