The Awareness We Need

The Awareness We Need

February 2 is Rheumatoid Awareness Day. Some people may wonder why it’s necessary to have a day focusing on informing others about rheumatoid arthritis (RA). Awareness is very much needed because common misperceptions about RA persist. Here are some of the major implications of RA that those of us who have the disease would love for others to understand.

Rheumatoid arthritis is different from osteoarthritis

When most people hear the word “arthritis” they immediately think about a painful condition experienced by elderly people. While RA is most certainly painful, it is very different from osteoarthritis, the form of arthritis most commonly experienced by senior citizens.1

RA is an autoimmune condition

While osteoarthritis is caused by wear and tear, rheumatoid arthritis is an autoimmune condition, meaning that the body’s very system designed to fight infection instead turns against joints, muscles, tendons, skin, and even organs.

RA can affect anyone of any age

While osteoarthritis most commonly affects people over the age of 65, the majority of people with RA are women between the ages of 30 and 60.2 I experienced symptoms of RA throughout my childhood that were misdiagnosed, and I was finally diagnosed with RA my senior year of college at the age of 22.

Rheumatoid arthritis can cause disability

As most people do associate the term “arthritis” with older people, when I share that I have RA I often hear, “But you’re so young!” or “But you look so healthy!” While the impact of RA can be devastating both on one’s lifestyle and one’s body, the effects of the disease are not always outwardly apparent.

RA's disability isn't readily visible

While advanced RA can involve deformity of the joints and/or necessitate the use of canes, walkers, or wheelchairs, more often the symptoms of RA are not readily visible.

However, this is no way means the condition isn’t serious. Just as with other autoimmune conditions such as type 1 diabetes and Crohn’s disease, symptoms may be severe enough to require multiple hospitalizations, expensive and unpleasant drugs.

Managing RA symptoms and multiple hospitalizations

Just as with other autoimmune conditions such as type 1 diabetes and Crohn’s disease, symptoms may be severe enough to require multiple hospitalizations, expensive and unpleasant drug treatments, and surgery, yet are not immediately apparent to a stranger.

Furthermore, RA often involves fatigue that can be debilitating, yet shows only in a slight pallor to one’s complexion or under-eye circles. Therefore, just because those of us with RA may look fine on the outside, we may be suffering on the inside.

Rheumatoid arthritis can lead to permanent joint damage

RA is a degenerative disease, meaning that untreated it worsens over time. Joint damage can become severe enough to require joint replacements, and the condition can even be fatal in rare cases when it impacts the heart.

Some people with RA experience such extreme symptoms they are permanently unable to work and may receive disability benefits. In an effort to avoid the high levels of pain and decreased mobility RA can cause, many of us with the disease are on medications that can cause serious side effects.

Using RA medications for pain and joint damage

Many of these drugs are immunosuppressants. Since RA is caused by the body’s immune system fighting healthy joints and tissue, suppressing the immune system decreases damage to the body. However, that also makes us more prone to illness and infection. methotrexate is a common RA treatment that is an oral form of chemotherapy and can cause extreme nausea and vomiting, hair loss, and skin problems. These are just a few examples of the physical downsides of the drugs that many of us with RA are willing to take in exchange for increased mobility and decreases in pain and risk of permanent damage.

RA is expensive in different ways

In addition to the side effects, treatments for RA are generally very expensive. My monthly IV infusion of Orencia is over $3,000 a month (and that’s the amount allowed by insurance and may be even higher for those without insurance). If I didn’t have health insurance, I would not be able to afford this drug that helps me have a decent quality of life. Unfortunately, the cost of RA drugs is on the rise even as pharmaceutical profits soar.

This leads to some RA patients not being able to reap the benefits of the drugs because they simply can’t afford them. In addition to the costs of treatment, RA can render one unable to work, either temporarily or long-term, resulting in loss of income. The costs of additional therapies, x-rays and lab work, and missing work for medical appointments and flare-ups of symptoms all add up as well.

There isn't a cure for rheumatoid arthritis

Currently, there is no cure for RA. This bears repeating: currently, there is no cure for RA. I emphasize that point because a common experience for people with RA is to be told by a loved one, coworker, or acquaintance about how so-and-so “cured” her arthritis through this or that diet, this or that supplement, or this or that treatment ranging from gin-soaked raisins to bee stings to magnets to you name it.

While this advice is well-intentioned, it’s generally not welcomed, as the implication is that this very complex disease has a quick fix. If there were a quick fix, or even a not-so-quick fix, that worked across the board for people with RA, we would try it. Instead, there’s a long list of RA “cures” that may indeed have a positive impact on one person but do absolutely nothing for the next.

The need for more rheumatoid arthritis research

Rather than telling people with RA how to dispense with their disease, we need to emphasize the importance of RA research to our government representatives and through support of organizations that fund this research. Scientists do believe that a cure for rheumatoid arthritis, as well as for other autoimmune diseases, is possible; but, it is going to require far more research to become a reality.

In the meantime, the 1.3 million people in the United States with RA (not to mention all those around the world) continue to suffer with the symptoms and ramifications of this disease.

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