In today’s episode of Arthritis at Home, Kelly Lendvoy, ACE’s Vice President of Communications and Public Affairs, sits down with Leanne Mielczarek, CEO of Lupus Canada, to discuss the National Lupus Survey — a groundbreaking patient-led initiative to capture the lived experiences of people living with lupus.
About the Lupus National Survey
Developed by Arthritis Consumer Experts, in partnership with Lupus Canada, the National Lupus Survey gives people living with lupus an opportunity to share their unique experiences, challenges, and ideas for improving care. In this episode, Leanne and Kelly explore the survey focus, including:
- The diagnosis journey– how long it took, who made the diagnosis, and what it felt like
- Treatment experiences– shared decision-making, medication access, and service gaps
- Physical and mental health– including pain, fatigue, anxiety, depression, and sleep
- Impact on work and daily life– absenteeism, need for accommodation, disability, and caregiver burden
- Equity in care – for women, Indigenous, Black, racialized, 2SLGBTQIA+, and rural/remote communities
- Sexual health and intimacy – often-overlooked aspects of life with lupus
- Experiences ofcaregivers – the essential role they play and the toll lupus can take on family and friends.
Take the Survey
Your insights will help ACE and Lupus Canada shape education, resources, and advocacy to improve care and treatment for people with lupus in all communities.
The survey takes just about 15 minutes to complete. All responses are anonymous and confidential.