Possible Rheumatoid Arthritis
Our family’s testing for possible rheumatoid arthritis
This article is part 2 to RA Runs in Families.
My daughters and my friend’s family members were being tested for possible rheumatoid arthritis. The imaware™ at-home RA test checks for three antibodies that occur with RA / RD and asks other questions related to RA diagnosis. When the RA test reports are ready, the imaware™ website sends a link to a secure message with the report. There is an easy to understand message for the patient, and a more detailed report of test results to print for your doctor.
My older daughter MK’s email came first. She read her imaware™ RA test report and texted me how relieved she felt about her results. Then she sent me several screenshots. I noticed that all three of her antibody levels were below the cutoff for likely RA, but two of them were still much higher than zero. Since I know anti-CCP (aka ACPA) is quite specific to rheumatoid disease, I still felt concerned—especially since I know she’s had RA / RD symptoms sometimes.
Likelihood of possible rheumatoid arthritis
The imaware™ report groups people into one of four categories of likelihood of possible rheumatoid arthritis. MK was the in the group less likely to be diagnosed with RA /RD. Some of my friends’ family members were in a somewhat likely group. For both my friend Shannon and me, seeing results below the cutoff was not a real relief because we realized that possible rheumatoid arthritis could still be in the futures of our loved ones.
Like our RD, our concern was one more thing we shared. Since we both work on the board of the Rheumatoid Patient Foundation (RPF), Shannon and I share a dedication to increase early diagnosis of RA / RD because treatments are more effective in early disease. This is the best way to improve the lives of people living with RD—which could someday include our loved ones.
We know that we are blazing the path for many others who will be tested and face early detection of possible rheumatoid arthritis in themselves or loved ones—in a world where doctors are still taught diagnostic criteria that tend to identify later disease. We must increase awareness of early disease by helping the world think beyond arthritis—the joint swelling, disability, and deformity that inevitably comes without early successful treatment. For these reasons, we will continue to share our stories and what we learn.
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Stopping possible rheumatoid arthritis
If you joined our Facebook chat for Rheumatoid Awareness Day in February, you heard from Dr. Kevin Deane of the Stop RA trials, who works with imaware™ the new at-home test. Were you surprised about trials learning about how to prevent rheumatoid disease? Maybe not if you’ve been following this site a long time or have read my book, RA Unmasked. As these investigators have been looking for ways to identify possible rheumatoid arthritis in earlier stages, it’s only logical that they look for ways to stop it from becoming full blown in the first place.
How has possible rheumatoid arthritis / disease touched you?
Right now, you and I—and Shannon’s family—are part of a movement worldwide to understand how early is “early” in possible rheumatoid arthritis and grasp the true nature of the disease as more than a type of arthritis. For many families like ours, this is also a very personal journey. Even as RPF work has continued to bring Shannon and me together, I have seen that not only does RA run in families—so does a warrior heart.
Click here for part 1 of RA Runs in Families.
Recommended reading
- Prevent RA Just Like Cancer
- Arthritis Prescreening Like Minority Report
- How to Live Like a Warrior: 3 Lessons
I fear the self test will lead to people who want to be diagnosed, doing self diagnoses. We see this in the diabetes community. Where young adults in particular, young women, try hard for and ask for the DX, despite being told by multiple doctors they do not have it. This has increased incredibility since the wide spread availability of home glucose testing at a fairly low cost. True there are not many, but thsoe who follow this path are deeply troubled and they have no restraint to getting a diagnosis . In the case of glucose testing it looks like people who are seeking community based on the idea that they have diabetes.
i hope this does not happen. Used responsibility home testing might be a great thing. I hope it is.
Thanks, Rick. I had never heard of this phenomenon with diabetes. I’ll keep an eye out.
First thoughts:
Since “sero-negative” RD exists for now (until we learn how to test for more antibodies), I believe that symptoms will still be needed for RD dx. Even imaware™ — who does not diagnose — does take symptoms into account with the reports. With RD, getting diagnosed with symptoms that look subtle or intermittent early on has always been the huge problem. I’ve written about this extensively because of many letters from patients and my own incredible experiences such as a young female rheum doc taking me off DMARDs because she thought my hands looked ok and she thought I must be able to “put on a bra.”