Those readers who are following our Vectra Voice regularly know that we are in the middle of a series sharing what happened during our Patient Ambassador meeting in Tampa. You can click here to see how we kicked off Arthritis Awareness Month, here to hear from the physician who spoke at our meeting and here to read why our sales reps love educating the RA community about Vectra.
One of the strongest patient voices in the RA community is that of Kelly O’Neill Young, who aptly calls herself the RA Warrior. Famous for her blog, the Rheumatoid Arthritis Warrior, Kelly has a large social following and founded the Rheumatoid Patient Foundation to raise awareness of RA and to support, educate and advocate for RA patients. We were so excited that Kelly was able to join our Patient Ambassador gathering in Tampa to share her story with our Ambassadors, who also stand as warriors for their courage and strength.
With humor and personal anecdotes, Kelly addressed our Ambassadors, spending a large part of her talk validating what many of them had experienced as part of their RA journey. “One of the big problems of RA is that it’s a show-me disease, but our symptoms are often invisible,” said Kelly.
She went on to share how she – and thousands of other RA patients, who have relayed their experiences to her through her blog and RPF surveys – have experienced challenges beyond the physical aspects of the disease because of abundant misinformation. Listed below are some of the myths that Kelly has uncovered.
- Myth 1: Imaging works perfectly
- Myth 2: Thou Shalt Exercise, or other easy-peasy ways to cure RA
- Myth 3: It’s just swollen hands and feet
- Myth 4: Treatments are a waste of money, just use aspirin
- Myth 5: Eat right to prevent/cure RD
- Myth 6: RD is caused by gorging on bad food
- Myth 7: If only we had by faith, we’d heal
- Myth 8: We don’t really need biologics
- Myth 9: Thou shalt not treat early
- Myth 10: RA patients choose to be sick
In sharing these myths, Kelly encouraged our Ambassadors to continue to advocate for themselves and others beyond these myths to get the care that they need.
Kelly had more to share as she introduced the idea of discordance, a misalignment between how a patient experiences their RA and how their physician or others in their lives may view their disease activity. Check back for our next blog post for details on why many of the RA patients Kelly has encountered have experienced discordance.
Throughout the evening, Kelly emphasized the strength and resilience of RA patients, whom she called out as STRONG PEOPLE. She encouraged our Ambassadors to continue to advocate and to do whatever they are able to experience joy.
“You can be joyful, you can be yourself, even if you can’t move,” she shared, before relaying experiences of whistling in church when she could no longer clap, kneel, sing or even hum because she needed to express the joy in her heart.