2 Big Announcements
Last month in What is Rheumatoid Arthritis (RA) / Rheumatoid Disease (RD)?, we asked what this disease IS, with 10 things it doesn’t make sense if doctors don’t know. When we truly know what RD is, we can diagnosis it early, treat it successfully, and cure it!
We’re taking steps to support that goal.
1. RAW’s first toolkit for medical professionals is now available – click here. I’ve been asked what patients want doctors to know about RD – this is the best place for them to start.
2. Two abstracts prepared from surveys of this community will be published and presented as posters at this year’s ACR scientific meeting, considering key concepts for understanding the disease. I’ll also be speaking at a session about engaging with patients. You’ll hear more details on the RPF blog in the coming days. Be sure to subscribe.
Anyone have just a touch of RA?
Does anyone say they have “MS in their wrist”? Seriously, a few years ago, a woman in church told me she had RA in her wrist (only). She was in her 60’s and was apparently lucky with only one joint that was obviously bothered by the disease. Actually, she probably didn’t even think of it is as a disease, being so mildly affected. (Eventually, it did spread.)
But mild joint symptoms or arthritis that’s “controlled” by medication is still no guarantee that Rheumatoid Disease is behaving itself. We’ve read stories in our community repeatedly of quiet joint symptoms while the disease wreaks havoc elsewhere in the body. Come to think of it, that’s how it was when my grandfather died suddenly of a first heart event.
Does anyone even say they have diabetes “in their pancreas”? NO. Because no one is confused about what diabetes is; so no one expects its affects to be limited to one part of the body. Likewise with MS or Lupus.
Studying people with Rheumatoid Disease (PRD) carefully, some things become clear
After diligently studying patients, McCarty concluded in 1966: “Further studies of the relationship between the local and systemic features of rheumatoid disease are badly needed.”
Nearly half a century later, that could undoubtedly be our mantra.
And McCarty recognized that Rheumatoid Disease does not affect everyone the same – that it’s heterogeneous: “Rheumatoid joint inflammation appears to be a sharply localized process that follows a prescribed pattern in each afflicted individual.” Sometimes, it attacks one joint at a time, like in the woman at my church. Or a man may wake up with a first full-body flare, inflaming all tendons at once, making it impossible to move. Or it might affect the eyes first, like with Sandy Blue. Or it can start in dozens of other ways, following patterns described by patients in the tens of thousands of comments on this site.
Whatever we eventually understand about Rheumatoid Disease, there are 2 things I’m certain of now
1. We’ll learn more and faster from listening to patients, the way McCarty did (and many others I studied while writing my book).
2. Arthritis is a symptom of Rheumatoid Disease; it is not the disease.
- What is Rheumatoid Arthritis (RA) / Rheumatoid Disease (RD)? 10 Facts Every Doctor Needs
- New TOOLBOX on good care for people with RD
- Textbook Rheumatoid Arthritis: Patient Input Will Replace It
- In the first month of RAW 2009 à The Invisible World of Rheumatoid Arthritis Speaks
- Your onset stories, in your own words
1 McCarty DJ, Gatter RA. A study of distal interphalangeal joint tenderness
in rheumatoid arthritis. Arthritis Rheum [Internet]. 1966 Apr [cited 2013 Aug 21];9(2):325-336. Available from: http://onlinelibrary.wiley.com/doi/10.1002/art.1780090208/pdf