“Imagine if the first thing you found when googling RA was the opinions of patients…”
Kelly Young is a woman with a mission. She would “like to see other patients do better, learn more and be empowered.” To that end, she is a strong advocate and works hard to provide people who have RA with accurate information.
Kelly is the wife of a pastor, a homeschooling mother of five children and lives in central Florida. Diagnosed with RA in 2006 around the birth of her youngest son, she has experienced problems finding a medication to control her RA. She has daily symptoms of active RA, including pain, fatigue and 5-6 hours of low-grade fevers. Kelly has taken methotrexate for about six years and says that it gives her a “15-20% improvement that is barely noticeable. But I stay with it - I’ve made a commitment to myself and other people to keep trying. It’s possible it’s slowing damage.” However, her condition is “always generally a little worse than last month - it’s a slow slide.”
Her deterioration has added challenges to the life of the family. “There are no dinner parties, people don’t come over and there is no Bible study,” as is normal in a pastor’s household. She describes her family working as a team, everyone sharing household chores. One of her daughters chose to go to college locally in order to be able to help Kelly physically, as well as with her advocacy initiatives.
Kelly describes being on the Biologics in the beginning of her life with RA and asking her rheumatologist at every appointment “when do I get better?” In 2008, the doctor said “I don’t know what to do with you, most people get better.” This was the start of Kelly’s dive into RA research on the family home computer and a pile of yellow legal pads. In early 2009, “I realized how committed I was” to the issue and she bought a laptop to dedicate to her work. Her website and blog RA Warrior was launched in the spring of 2009, choosing its title as a derivation of her first name - Kelly means warrior. Since then, she has “been consumed by it.”
She believes the growth of RA Warrior “speaks to the need that’s out there … There were so many people who were just where I was, saying ‘is there an answer,’ ‘this isn’t quite working,’ ‘what am I supposed to do now?’” On her site, Kelly provides information about RA, including sharp and insightful dissection of studies, challenging preconceptions in rheumatology and society and provides an opportunity for a lively discussion for her readers. As RA Warrior has grown, her efforts in advocacy have, too.
A Change in Name
One of Kelly’s recent advocacy initiatives is acting as a leader in the community’s call for a change of name for RA to Rheumatoid Autoimmune Disease (RAD). “People don’t understand what’s wrong with us, so they don’t understand what our needs are. When we look at the paltry research dollars, when we look at the fact that patients die of serious effects of this disease, but it’s not recorded on death certificates, at physicians confused about whether we need referrals to cardiologists or eye care,” it’s obvious that there are a lot of misconceptions. Kelly quotes Dave deBronkart (ePatient Dave) saying “the problem is that arthritis is a noun and rheumatoid is an adjective, so when you put the two together, it’s just a type of arthritis.” She goes on to say that “it’s a disease where arthritis is a significant symptom. If we’re just treating that symptom, just doing research on that symptom, we are not going to change the mortality rate and we haven’t. We need to change the perception and make it more clear that it’s so we can have research, people can have accommodations and appropriate care.”
Rheumatoid Patient Foundation
In 2011 Kelly founded the Rheumatoid Patient Foundation (RPF). This came out of discussions with other people living with RA about the lack of a foundation focused on those having the disease. She and the other four founding members all felt that creating such a foundation would be “too hard” due to the challenges of having RA, but that “we’d do it anyway because it needs to be done.” A year ago, the RPF was incorporated in Florida as a nonprofit organization. It is funded by grants and donations from individuals.
The mission of the RPF is to “improve the life for people with rheumatoid disease.” The goal is to do this by “providing patient education, patient awareness, advocate from a patient point of view and to raise money for research.” In the past year, the RPF has appointed an Advisory Board, created a wonderful video in which people explain the reality of living with RA in their own words. The Foundation staff and volunteers took this video and other information and exhibited at the American College of Rheumatology annual meeting in Chicago. They also completed their first survey and are working on collecting the results.
The Foundation has big plans for the coming year, including completing a membership area and forum on the website and choosing programs and priorities. As well, they hope to encourage doctors and people who are not patients to join the RPF. Kelly says “we want everyone to join!”
Thank you, Kelly for this inspiring interview!
Lene is the author of the award-winning blog The Seated View