Living in a rural area creates unique challenges for Vanessa Kerr, who lives with rheumatoid arthritis (RA) and has sought effective care for her disease for years. After years of treatment delays and miscues, she became empowered as her own advocate to drive far to find the care she needed and deserved.
Vanessa shares her journey in a poster, “Living with Rheumatoid Arthritis in a Rural Farming Community: How I Found a Rheumatologist and Got Targeted Treatment,” presented at ACR Convergence 2022, the annual meeting of the American College of Rheumatology.
Getting a Diagnosis
Vanessa, a third-grade teacher, mom of five children, and wife of James, a farmer, first noticed that something was wrong after the birth of her fourth child. She was too weak to pick up her newborn out of the crib. “When I did, it left my hands, arms, and shoulders aching to the point that I’d walk around holding them up and crying,” Vanessa writes in her poster.
She sought help from her family physician who suspected RA and referred her to a local rheumatologist who was only available once a week, making it difficult to get an appointment. She had a brief period of remission while she was pregnant with her fifth child. But her symptoms came back — and, this time, it took her six months to find a rheumatologist. Her previous doctor moved away.
She was finally placed on a Disease-Modifying Anti-Rheumatic Drug (DMARD) and offered steroid shots during flares — but it wasn’t enough. “There were times that I couldn’t work, and my family had to help me dress. My rheumatologist never discussed treatment change options.” says Vanessa.
Seeking Better Treatment
Her quest for better care began when her cousin, who worked in autoimmune research, suggested finding a more proactive rheumatologist. Vanessa found a new doctor an hour away, but the long drive was worth it. The new rheumatologist placed her on a biologic along with the DMARD and took her off the steroid.
“My symptoms improved dramatically,” Vanessa writes in her poster. “I was given a direct line to the nurse resulting in quick response times when flaring. The office is open four days a week and nurses are available on the fifth day to order refills and convey special needs to him.” During the pandemic, Vanessa met with her rheumatologist over Zoom.
The experience of seeking better care helped empower Vanessa to advocate for herself and take control of her RA treatment. It also taught her to better prepare for her appointments between visits. She now comes equipped with a list of concerns, questions, and symptoms — and a loved one to lend support and another set of ears. “I remember that I know my body, pain level, symptoms, and what is working for me,” she writes in her poster. “If I feel my concerns are being dismissed, I say so or look elsewhere.”
What Vanessa Learned — And What You Can Learn Too
Here, we talk with Vanessa about her experience submitting a patient poster for ACR and what she hopes others will take way from her learnings:
CJ: What was your motivation for submitting a patient perspectives poster?
Vanessa: “I wanted to share a perspective with the general public and the medical community to give them information about the struggles we have in the rural community, as well as to give support to others who struggle to get the care they need.”
CJ: What are you most looking forward to at ACR22?
Vanessa: “I will attend virtually, and I look forward to hearing from other patients to get more tools and information which I can use in times of flares or in monitoring my own care.”
CJ: Why is it important for patients like you to share their own research at ACR?
Vanessa: “We research things which are vitally important to us, things which may be unintentionally overlooked by the medical community. We are also our best advocates and need to empower others with RA to advocate for themselves, too.”
CJ: What did you learn about yourself and your health journey by working on your poster?
Vanessa: “It is empowering. In the patient chair, you often feel like the victim. By taking more personal responsibility for your own care, by educating yourself, all those things empower you to take control of your disease. Now I take notes and look back at my own health record logs.”
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Kerr V. Living with Rheumatoid Arthritis in a Rural Farming Community: How I Found a Rheumatologist and Got Targeted Treatment [abstract]. Arthritis & Rheumatology. November 2022. https://acrabstracts.org/abstract/living-with-rheumatoid-arthritis-in-a-rural-farming-community-how-i-found-a-rheumatologist-and-got-targeted-treatment.