A Voice for Patients

An RA Warrior creates an advocacy and support organization for patients.

 

By Diana Price

When Kelly Young was diagnosed with rheumatoid arthritis (RA) after the birth of her fifth child in 2006, she didn’t know anyone else with the disease. Desperate for information, she struggled to shed light on the diagnosis that, overnight, transformed her from an active 40-year-old to someone incapable of performing basic, everyday tasks. Determined to be proactive, Kelly sought out research and community, reaching out to other patients and the medical community.

In 2009, realizing the critical benefit to patients provided by shared resources and experiences, Kelly started a website and blog, Rheumatoid Arthritis Warrior (rawarrior.com), to support those battling the disease. For the past four years, Kelly has provided invaluable information to patients who find themselves facing a diagnosis that, though incredibly common, is not well understood and is often not acknowledged for the debilitating impact it can have on patients’ lives.

As Kelly worked with other patients and rheumatology professionals to build the online RA Warrior community, she found that patients were seeking a way to make their voices heard: “We were connected with a lot of patients, and they were asking—via e-mails and blog posts—‘Isn’t there an RA foundation?’ and telling us, ‘The RA foundation should do X.’” But there was no such foundation that represented patients, and after several years of hearing patients continue to clamor for an outlet to raise awareness and advocate for research, Kelly, along with a group of equally committed patients and with input from two other leaders in the RA nonprofit community, took the leap and created the Rheumatoid Patient Foundation (RPF).

With a mission to improve the lives of patients with rheumatoid diseases such as rheumatoid arthritis and juvenile arthritis through a variety of means—including research, public awareness, patient education, and patient-led advocacy—RPF is now in its second year of striving to make a difference in the lives of patients. The organization’s website (rheum4us.org) provides information about RA, answers to common questions, and links to other RA sites and resources. In addition to the information provided online, RPF has created print brochures and posters about RA and has made them available to doctors and nurses to distribute to newly diagnosed patients, with the goal of educating patients upfront about the disease and available support.

In addition to the resources and information, Kelly says that RPF is dedicated to serving as the voice of patients through advocacy efforts that raise public awareness of patients’ needs among rheumatology professionals, policymakers, and the public. The organization has presented at the American College of Rheumatology annual meeting, the Arthritis Introspective annual gathering, and on Capitol Hill, sharing information and highlighting patients’ experiences and needs.

It’s critical, Kelly says, to be sure that patients’ voices are heard by industry professionals who, up until now, may know about RA only from the outside. “If the only message a provider or industry professional has ever heard is a commercial, which is selling a product, they don’t have the full picture. The patient perspective is key to present to industry.” The organization is also working to ensure that patients are represented in research; to this end RPF is currently collaborating with the Mayo Clinic on a survey about patient care.

Moving forward, Kelly hopes RPF will continue to increase awareness of RA, add patient input to research studies and policy that influences patient care, and help improve diagnosis for patients, many of whom have symptoms for years before they are accurately diagnosed. “The best hope we have for remission, from what we’ve seen from science, is early, aggressive treatment,” Kelly says, “so the public and the medical community need to be more aware of the disease.”

As she works with the RPF Board of Directors to further the organization’s mission while waging her own private battle with RA, Kelly remains fiercely committed to improving the lives of other patients. “I often work 60 to 80 hours a week—much of it from my couch or soft chair—using my laptop and talking on the phone to connect with patients and review research,” Kelly says, describing her daily work on behalf of RPF and RA Warrior. And though the work is intense, she does not anticipate slowing down anytime soon. “Every single time I think This is too hard or It’s too much, I read messages from patients that keep me going—messages that say, ‘What you’re doing is giving me hope,’ or ‘What you’re doing has saved me,’ ” she says. “That’s why we’re doing this, why we’re driven to do this; we believe we are helping people and that this is necessary work.”  _

For more information about the
Rheumatoid Patient Foundation, visit rheum4us.org and rawarrior.com.