I posted the following letter to my Facebook account today, in honor of World Arthritis Day. I know most of the readers of my blog are already far too well-acquainted with autoimmune/inflammatory arthritis, but for those of you who aren’t, or who are interested in the current “arthritis situation,” particularly in the US, see below.
This is long, so I want to thank you in advance for reading. I’ve put some key points in bold, so feel free to skim. It means a lot to me that you are kind (or curious) enough to click though and read this.
If, on second thought, you only have a minute, forget everything you thought you knew about “arthritis,” and go read this 60 Second Guide to Rheumatoid Arthritis (RA).
If you’re up for a bit of an essay:
You’re probably looking at the title of this note and thinking “World Arthritis Day? What does that have to do with me?” Well, a lot, actually. Did you know that 1 in 5 Americans has been diagnosed with arthritis (~50 million) and public health experts expect this number to continue to rise as the population ages? (1) Many people think of arthritis as a disease of the elderly, but that’s only part of the story. Nearly two-thirds of arthritis diagnoses are in people under the age of 65, including children, teens, and young adults (1). Likely several people close to you have been affected by arthritis, though you may not know it because the symptoms are often invisible.
“Arthritis” is an umbrella term that covers over 100 different diseases and conditions. The most common form of arthritis is Osteoarthritis (OA), the kind of wear-and-tear, comes-with-old-age arthritis that is limited to the joints, is generally diagnosed in older adults, and can often be managed with exercise, weight loss, and over-the-counter medication. However, among those 100 kinds of arthritis, there are roughly 30 forms of autoimmune arthritis (also sometimes referred to as “inflammatory rheumatic diseases” or “inflammatory arthritis”) that can be life-threatening and affect not only the joints, but organ systems throughout the body, for example the heart, brain, eyes, lungs, GI tract, skin, and vascular system. In these diseases, the body turns against itself, deploying the immune system in the destruction of its own joint linings, organs, and connective tissues. Some common types include rheumatoid arthritis (RA), lupus (SLE), scleroderma, juvenile idiopathic arthritis, and Sjogren’s syndrome (recently brought to national attention by tennis star Serena Williams (2)). It is not uncommon for an individual to be diagnosed with multiple or overlapping autoimmune conditions, or to have several years pass between the onset of symptoms and a final diagnosis.
Currently, over 7 million Americans suffer from autoimmune arthritis and inflammatory rheumatic diseases, with women and minorities disproportionately affected. (The total for all autoimmune diseases, not just those under the arthritis umbrella, is estimated at about 24 million). These diseases are frequently diagnosed between the ages of 15 and 50, often striking individuals as they enter college, join the workforce, and/or try to start a family.
What exactly does this “7 million” mean for you? According to the Mayo Clinic, if you are a woman, you have a 1-in-12 chance (8.4%) of developing an inflammatory autoimmune rheumatic disease in your lifetime (3). For men, that number drops to a still-surprising 1-in-20 (2). By comparison, a woman has a 1-in-8 (12.15%) chance of being diagnosed with breast cancer in her lifetime, but only a 1-in-36 (2.81%) chance of dying from the disease (4). Yet the funding disparities between arthritis and other diseases are depressingly large. (5) In addition, it’s difficult to determine specific risk factors or causes for these diseases; while there seems to be a genetic predisposition in some patients, no one knows exactly what causes the onset of autoimmune arthritis.
Autoimmune arthritis and cancer are treated with many of the same drugs, including chemotherapy and newer biologic medications used to suppress parts of the immune system– you may have seen advertisements for these on TV, like the one for Enbrel featuring golfer Phil Mickelson. These drugs are expensive, powerful, and dangerous, but for those people with autoimmune arthritis who can both tolerate and afford them, the benefits generally outweigh the risks. Unlike the majority of cancer survivors, however, autoimmune arthritis patients must remain on a low dose of these drugs for the rest of their lives in order to prevent crippling disability and organ damage because there is no cure. Even with well-controlled symptoms, the life expectancy of a person with a disease like rheumatoid arthritis can be shortened by 3 to 15 years (5,6).
There are also a bunch of other unpleasant details that go along with autoimmune arthritis. Apart from excruciating pain, the symptom common to nearly all forms of autoimmune inflammatory arthritis is fatigue. And not just “oh, I’m a little tired today” fatigue, but the kind of bone-tired fatigue that accompanies a bad case of the flu. This is one of the hardest symptoms for patients and their doctors to manage, even after inflammation and pain have been reduced. In addition, medications used to suppress the immune system cause all kinds of unwanted side effects, which can include weight gain, weight loss, hair loss, cognitive impairment (aka “brain fog”), sun sensitivity, insomnia, increased risk of infection, increased risk of certain kinds of cancer, and more. On top of all of this, grappling with the long term effects of a chronic, painful, incurable, and often invisible disease can be downright depressing, even for the most optimistic person.
So the next time someone mentions that he or she has arthritis, pause a second before you say something like:
Because in many cases the answer will be “no”: No, I’m not too young. No, your grandma probably doesn’t have what I have. No, tylenol/glucosamine/some extreme diet/internet-cure-of-the-week won’t help. Yes, exercise is good, but only low impact, and only when inflammation is under control. Chances are, however, polite questions, or a simple “Is there anything I can do?” will be much more graciously received.
For more information, or to find out how you can get involved– even just by emailing your elected officials– visit the Arthritis Foundation, especially the section on advocacy, or the World Arthritis Day website. Or you can just ask me. Knowing is half the battle, right? Thanks for reading.