The Lupus Foundation of America and Eli Lilly and Company released results from a new survey that sheds light on the lupus journey and the challenges not only for those living with lupus, but also for lupus caregivers. The UNVEIL study, which involved over 1,000 people with lupus and lupus caregivers, highlights the devastating impact lupus has on all aspects of life including family, work, finances, treatment experiences and overall quality of life.
“Throughout the course of their disease, people with lupus experience significant symptoms such as pain, fatigue, depression, cognitive issues and physical impairment that impact every facet of life,” explains Sandra Raymond, president and chief executive officer of the Lupus Foundation of America. “Despite these devastating complications, lupus can be hard for others to see because there may be no visible symptoms. The UNVEIL survey provides the public an opportunity to see how life can be interrupted by lupus and why we need everyone’s help to fight this cruel disease.”
The Lupus Journey Often Begins With a Long, Complicated Path to Diagnosis:
- On average, it takes nearly six years for people with lupus to be diagnosed from the time they first notice their lupus symptoms.
- A majority of people with lupus surveyed (63 percent) report being incorrectly diagnosed. Of those reporting 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 Lupus Proves A Challenge to Treat:
- On average, people with lupus surveyed take nearly eight prescription medications to manage all their medical conditions including lupus.
- Of the 23 percent of people with lupus who experience severe lupus flares all or most of the time over the last three months, 40 percent were admitted to the hospital at least once during the past 12 months, with an average stay of 10.5 days.
Lupus Interrupts Every Facet of Life
- For the majority of people with lupus surveyed (89 percent), lupus impacts their work life.
- More than half (55 percent) of people with lupus surveyed whose work is affected are working part-time, intermittently or are unemployed because of lupus.
- Almost three-quarters (74 percent) of caregivers report that caring for someone with lupus has an impact on their work productivity.
- A large proportion (41 percent) of caregivers surveyed are only able to work part-time or intermittently, or are unemployed, with nearly half (45 percent) of those indicating caregiving responsibilities being the reason. In addition, 60 percent note they spend 16 or more hours per week helping loved ones with lupus.
Family life/Daily Living
- More than 75 percent of caregivers surveyed help a loved one with lupus with daily activities, such as cooking, shopping, household chores and providing financial help.
- Eighty-four percent of people with lupus surveyed indicate they feel they are a burden to their family and friends due to their inability to perform daily activities. In addition, 94 percent indicate that lupus interferes with their ability to enjoy life.
- Nearly three in four people with lupus surveyed (76 percent) said fatigue limits their ability to participate in social activities. For caregivers, nearly half surveyed (49 percent) replied that caregiving responsibilities impact their ability to socialize with friends.
- The majority of people with lupus surveyed feel anxious (90 percent) and depressed (85 percent) due to their lupus.
- More than 94 percent of caregivers surveyed experience increased anxiety and stress in relation to their caregiving, worrying that their loved one with lupus will become sicker.
“Lupus goes well beyond joint pain and fatigue. For me, it has derailed my life and impacted not only me but everyone around me,” said Wendy Rodgers, a California woman living with lupus. “Initiatives like this take us one step closer to helping the public better understand the needs of people with lupus, as well as those who care for loved ones with the disease. The more people know about lupus, the better support there will be for those living with the disease and the sooner we can conquer it.”