Advocating for research, greater understanding, and life-saving changes in the way we look at this disease.
If you’ve spent any time in the rheumatoid arthritis/rheumatoid disease (RA/RD) community, you’ve probably heard of Kelly O’Neill Young or spent some time on her website, RAwarrior.com, which she founded in 2009. She is also the founder of the Rheumatoid Patient Foundation (RPF), which advocates for the RA/RD community.
Kelly is renowned for her speeches at patient and professional conferences, where she pulls no punches in addressing the immediate need for greater understanding of RA/RD.
Words Matter: Shrinking the Mortality Gap
In particular, Kelly says there’s a need for a return to the term “rheumatoid disease” instead of “rheumatoid arthritis.” Categorizing the condition as “arthritis” alone ignores many extra-articular effects of the disease, which means patients often receive only partial treatment, and only for the symptoms we can see, like swollen or twisted, painful joints.
“We have a mortality gap in the rheumatoid disease community, and the terminology change is the simplest thing we can do today to shrink that mortality gap and improve patient care and outcomes,” she says. “A number of studies show preventative care for any kind of systemic symptom is very low in patients with RD, who are often considered high-maintenance patients already. They’re not being screened for cancer, infections, and other serious risks.
“The bar for screening people in the general population for these risks is higher than in the RD community—but it should be higher for those of us with rheumatoid disease!” she continues. “Because of the nature of our disease, we’re at greater risk than the general population to develop atrial fibrillation, infections, cancer, stroke—and yet many doctors focus on treating joint symptoms alone, so patients with RD are undertreated.”
(For more on Kelly’s thoughts about terminology and its impact on patient care and outcomes, see her article “Words Matter” on page X.)
Doctors With a Narrow View
Part of the problem, says Kelly, is that many doctors have a narrow view of RA/RD. “Patients come in with symptoms that don’t sound like an easy pattern to decipher,” she says, “and that’s very frustrating for doctors if their training hasn’t covered the complexities of this disease. RPF released a white paper on this: We surveyed 1,400 patients, and the majority of them not only didn’t experience relief of their pain after treatment, but also their disease expressed itself in ways that don’t fit the general public’s conception of RA. We need our health care providers to be better educated.”
Kelly experienced a significant delay in treatment for just this reason. Although she began experiencing episodic symptoms as a child, she was not diagnosed until 25 years later, when she transitioned from a flaring pattern to having full-blown, chronic progressive disease. By this time, she had five children and was homeschooling, and her symptoms made life extremely challenging.
She searched desperately for a diagnosis, and while her own research pointed to RA/RD, doctor after doctor dismissed her. Only through her own tenacity did she finally convince a rheumatologist to test her blood; even then, he never reached out with results. She booked herself a follow-up appointment one month later and went—bringing along her kids—to request her lab results.
“The whole family remembers it very clearly. He handed me a blurry photocopy, told me to take methotrexate, and said maybe one day I would experience remission, before hurrying out,” she says. “I was devastated.” Kelly says her children had always been supportive of her, but since that day, they’ve truly been her champions.
The TV Version, and the Reality
Most TV commercials for RA/RD medications focus on swollen, painful joints—so most people think that’s all there is to the disease. But Kelly says the reality is so much worse.
“If you have had a sprained ankle, tennis elbow, jammed toe, rotator cuff injury, whiplash, carpal tunnel syndrome, an ACL tear, temporomandibular joint (TMJ) disease, laryngitis, or plantar fasciitis, then you can imagine rheumatoid disease,” she says. “You just have to imagine you have all of those at once, in every joint in your body. At the same time, you have the flu. As the disease progresses, you’ll have joint deformities, irregular blood pressure, shortness of breath, and more systemic effects.
“My grandfather died from RD. He did not die of swollen fingers. He died from all the systemic complications of the disease,” she says. If more people understood its severity, the disease would be taken more seriously—as would the patients who ask for help and support.
Sources of Support
Kelly’s daughter Kathryne Young is one of her greatest cheerleaders. From a young age, Kathryne joined Kelly on the road; a travel partner is a necessity for Kelly to be able to travel far from home to speak. At one American College of Rheumatology (ACR) conference, Kathryne proclaimed her desire to pursue medicine.
“My daughter Kathryne is now earning her Ph.D. in immunology because of the passion she developed attending scientific meetings with me,” says Kelly. “We hope to work together one day to advance understanding of rheumatoid disease in a way that leads to new treatments.”
Coping With Misconceptions
It has been hard for Kelly to talk in detail about her own experience at times. She says this is very typical in the RA/RD community, noting that misconceptions about the disease fuel the idea that people can cure it by eating a different diet or working out harder.
“People with rheumatoid disease spend so much time trying to make it look like we’re doing OK, that we can manage it, because we worry people will think we’re just weak,” says Kelly. “I’ve always thought I was a strong person. My dad was a Marine, and we used to do sit-ups every day and punch each other in the gut to prove our strength. So I’m a strong person. It’s very frustrating when people assume we’ve done something to deserve this disease. We become defensive, and that makes it harder for us to cope day-to-day when people are insensitive or dismissive.”
Kelly says she’s found great solace in online support groups. “It’s good to have a place to talk in our communities so the anger doesn’t build up,” she says.
“All the symptoms and emotions can make you feel crazy and doubt yourself. It’s important to have at least one person you can talk to in person, too, so you can talk through all the complexities and feel supported,” she says. Kathryne often plays that role for Kelly; they speak on the phone almost every day.
“She’ll ask me how I am, and I know I can tell her all the details without annoying her, because she really cares—and then I don’t have to re-tell them all to everyone else,” says Kelly.
While she would never have chosen RA/RD—a disease she says most days is a living hell—Kelly says she has learned to be even stronger because of it. “We are forced to learn to define ourselves differently—not by what we can do, but by who we are in this world.”
Motivated by Her Mom, Kathryne Young Pursues her Ph.D.
Kathryne remembers going to early doctor’s appointments with her mom and feeling extremely frustrated. “Seeing doctors mistreat my mom is one of the hardest things I’ve experienced,” she says. “But the absolute hardest thing is to see her on days when she’s incapacitated by the disease and struggles to move.”
In the past decade, Kathryne has helped Kelly a lot, including attending five ACR annual meetings to help her with the day-to-day challenges of travel. That exposure to the world of medicine—and seeing her mom in agony—motivated Kathryne to pursue a Ph.D. in immunology at Rosalind Franklin School of Medicine and Science, near Chicago.
“My current research into what makes a certain kind of T cell more reactive and pathogenic in people with autoimmune disease offers us the potential to better understand its causes, and to move us closer to a cure,” she says.
Kelly’s Top Tips for the Recently Diagnosed
RAwarrior.com is packed with resources, but we asked Kelly for her three favorite resources for the newly diagnosed person with RA/RD:
- The RA Map Tool, an interactive guide to the essentials: bit.ly/RAmap
- 15 Early Symptoms of RA, according to patients—because early detection is essential for better outcomes: bit.ly/15earlyRA
- 20 Quick Tips for RA Management, especially if you’re trying to create a partnership with your doctor: bit.ly/20quickRA