In a special edition of JointHealthTM insight, Arthritis Consumer Experts reports on the findings from an online survey, co-developed with Lupus Canada and members of the Lupus Working Group.
Lupus is a complex autoimmune disease that can affect the skin, joints, kidneys, lungs, heart, blood cells, and brain. It most often affects women in their prime working and child-bearing years and disproportionately impacts Indigenous, Black, and other racialized communities. Despite advances in treatment, many Canadians living with lupus continue to face significant barriers to diagnosis, care, and support.
The national survey explored:
- Diagnosis and treatment journey
- Access to care and medications
- Daily activity and physical limitations
- Impact on work and income
- Education and support needs
What we heard:
The findings revealed in the JointHealthTM insight show a clear gap between clinical guidelines and real-world experience around key patient issues:
- Diagnosis delays and dismissal
- Uneven access to medications and care
- Limited access to non-medication supports
- Significant impact on work and daily life
- Strong demand for education and support
Click here to view the JointHealthTM insight.
We extend our sincere thanks to everyone who shared their experience. Your voices are shaping the future of lupus care in Canada.