Life’s Interruptions from Lupus Unveiled
NEW Survey Results Released
After receiving responses from 827 people with lupus and 253 lupus caregivers between February and March 2014 for the national UNVEIL survey, here is a glimpse of what we’ve learned about the lifelong impact lupus has, not only on those living with the disease, but on those caring for someone with lupus as well:
The Lupus Journey Begins with a Long, Complicated Path to Diagnosis
A majority of people with lupus surveyed (63 percent) report being incorrectly diagnosed. Of those reporting an incorrect diagnosis, more than half of them (55 percent) report seeing four or more different health care providers for their lupus symptoms before being accurately diagnosed.
The Severe Impact of the Disease Proves a Challenge to Treat
People with lupus take on average nearly eight prescription medications to manage all of their medical conditions including lupus.
Lupus Interrupts Every Facet of Life
In addition to the significant physical symptoms such as pain, fatigue, cognitive issues and depression, the majority of people with lupus and their caregivers surveyed saw the impact on their families, work and mental health.
The Lupus Foundation of America’s website has answers to hundreds of questions about lupus and managing the disease, as well as a wide variety of resources to help people with lupus and their caregivers.
Whether you have lupus or care for someone who does, below are some helpful tips:
- Visit our on-line caregiving resource, Caregiving: What You Need to Know, comprehensive resource designed to provide caregivers with guidance, support and advice.
- Whether you have lupus or care for someone with lupus, pay as much attention to your mental health as you do to your physical health. We have more information on depression and how and when to seek help.
- Understand that life with lupus impacts the entire family, and not only the person with lupus. We have more information about how lupus may affect family dynamics and what you can do to help a loved one with lupus.
- The Foundation has a network of chapters, support groups and offices around the country. Find one near you at lupus.org/chapters.