Driven to uncover RA facts
My search for facts about Rheumatoid Arthritis (RA) led me to build this website. So many questions. So much misinformation, blame, and confusion out there. It all contributed to my passion for uncovering RA facts and making them clear.
I didn’t feel ready when I started writing this blog in 2009. There were so many things I was building for you that were unfinished (like the RA Map or the Onset Story project). And so much I didn’t know. But I had so much I wanted to tell you that one day, I just started typing – directly on the Blogger site – not even saving a copy in my red Dell laptop.
Here I am eight years later with a similar problem. There’s so much I’ve learned and about rheumatoid disease (the more accurate historical term) and so many projects need to be finished. And so much has happened with my own rheumatoid disease. Where do I start?
Maybe we can do the same thing that worked then? Just start.
Let’s start with 5 RA facts everyone should know.
You might also like to read:
- 15 Early Symptoms of Rheumatoid Arthritis
- Saying Rheumatoid Disease, Not Arthritis: It’s Not Just Me
RA facts of life we need to know
There are several RA facts of life we can’t escape. They are obvious to me after listening to people living with rheumatoid disease (PRD), dealing with it personally, and reading research articles.
Here are 5 RA facts that are essential to know.
1) RD is often invisible – but not imaginary.
I believe you! But here’s what happens: Symptoms of RD may not be evident to casual observers. Even familiar symptoms of RD can be visibly subtle, especially in the early years. Obvious swelling or redness may be intermittent. Characteristic rheumatoid deformity or bone erosions may occur years after disease activity has already reduced function by its effect on joint support structures like tendons. That means PRD don’t imagine how hard it is to do things – even if it doesn’t look so bad.
2) Arthritis is only one symptom of RD.
Arthritis, or joint inflammation, is a universal symptom of RD. However, RD is a systemic disease that can affect most parts of the body. Arthritis is not always the first symptom or the most significant problem for PRD. Think about whether arthritis is the cause of the RA mortality gap. That means the “disease” part of the disease is a real problem.
3) RD makes “progress” – and the patient gets worse.
Rheumatoid is a progressive disease, which means it gets worse over time. Unless disease progress is slowed by an exceptional response to disease treatment, the person with rheumatoid disease (PRD) will experience more constant and more severe disease activity over time. This can mean more pain, disability, and health problems.
4) RD always gets to the hands – eventually.
One of the gravest misconceptions in common RA facts involves the hands. Certain hand joints have been mistakenly placed at center stage of the disease, so much so that they have been required for diagnosis. Rheumatoid is not, as some doctors insist, “a hand disease.” Yet RD does tend to strike joints that are moved most, which for most people includes hands, neck, and knees. Our community has seen people whose eyes, feet or ankles were affected years before hands became involved, but it does seem that hands will always eventually be struck. So hands could be used for diagnosis after all – but only after the fact.
5) Many doctors “know” incorrect facts about RD.
It is difficult to summarize the faulty “RA facts” that medical professionals commonly learn. Some of these misconceptions are fairly harmless such as whether distal finger joints (DIP) can be involved in RA. Others are more injurious such as whether RA affects the spine, lungs or tendons. Some misconceptions cause persistent problems for PRD. For example:
- Diagnosis and treatment are delayed because of preconceptions of what the disease should look like;
- People live in terrible pain or with unsuitable diagnoses like fibromyalgia because of beliefs that RD shouldn’t be very painful;
- Systemic disease symptoms are not addressed because of misconceptions that extra-articular disease is rare and PRD exaggerate;
- Affected joints are untreated because of a misconception that pain and function loss can only occur after permanent deformity is obvious.
That means patients need to know the real RA facts for themselves!
WHAT RA FACTS DO YOU THINK ARE NEED-TO-KNOW?
Whether it’s one of these listed or something else, what RA facts do you think are critical to get straight? Have any of these affected you?
- Does Rheumatoid Arthritis Affect Tendons?
- 5 Reasons Rheumatoid Disease Is a Better Term than Rheumatoid Arthritis
- We Refuse to Be Mislabeled: Updating Rheumatoid Arthritis (RA) to Rheumatoid Disease (RD)