We are excited to participate in a new program at the American College of Rheumatology meeting this year – co-authoring a presentation in the Patient Perspectives session.
Diane Gross, National Director of Advocacy and Programs worked with Denita Perry, a young woman living with lupus since her childhood to create a poster presentation called “Learning to Self-Advocate in the Transition from Pediatric to Adult Lupus.”
The presentation traces Denita’s journey from diagnosis at age 15. “It was information overload. I didn’t really understand what was going on. At first, I didn’t always take my meds. I was embarrassed. My peers didn’t understand. I was a dancer and on the track team with two college scholarship opportunities. Lupus took that all away from me.”
Learning to take care of herself was a tough road – while her lupus was well managed in her teens, as an adult her condition got worse. “I had to learn to be an adult. I learned how to advocate for myself. I used to keep things to myself and not share with doctor, but I learned to speak up.”
Denita has accepted her lupus and with acceptance came control. For instance, she changed how she eats, exercises, and knows when she needs to get to the ER. She knows her limits, finishing college and working part-time at a pace she can handle while looking ahead to job opportunities that can accommodate her limitations. In short, Denita is a well-adjusted adult living her life with lupus.