Take this quiz to learn more about the often unseen and invisible physical, financial and emotional toll that lupus can have on people that live with the disease. Together, we are addressing these invisible issues to improve the quality of life for all people impacted by lupus.
The symptoms and health effects of lupus can range from mild to-life threatening. In fact, lupus can affect any organ including the heart, lungs, kidneys or brain. What percent of people with lupus experience organ involvement?
Approximately 50 percent of people with lupus experience some form of organ involvement. And, up to 80% of children with lupus will develop lupus nephritis (inflammation of the kidneys).
If not adequately controlled, lupus nephritis can lead to kidney failure, the need for chronic dialysis or kidney transplantation, and even death. That’s why the Foundation has awarded a five-year $500,000 grant to Dr. Kathleen Sullivan of the Children's Hospital of Philadelphia to develop a home test to assess kidney function in children. If successful this new, non-invasive diagnostic tool for pediatric lupus nephritis would help children avoid the need for a painful kidney biopsy.
We know that many people with lupus often experience symptoms of anxiety and depression due to the impact of lupus. What percent of people with lupus experience feelings of anxiety and depression?
More than 80 percent
Thanks to the input of lupus warriors from the 2014 UNVEIL survey we know that more than 80 percent of people with lupus reported feelings of either anxiety (90%) or depression (85%).
We continually work together with medical advisors and our education committee to create medically sound resources that meet the needs of people with lupus. This includes programs like The Expert Series and the episode, Mental Health and Wellness During a Time of Uncertainty.
Lupus can cause a significant financial impact. The average annual financial impact of lupus per person is:
The average financial impact of lupus, per person is up to $50,000 annually in direct and indirect costs.
Expanding access to treatments, including limiting financial burden by reducing out of pocket costs, is critical to the Foundation’s mission. In 2005 we founded the Medicare Access for Patients Rx (MAPRx) Coalition which brings together more than 60 national organizations, representing patients, caregivers, and healthcare professionals. Together, we ensure people with chronic diseases and disabilities have access to affordable medications under Medicare Part D.
Extreme fatigue, which can be debilitating, impacts 80 percent of people with lupus. True or false?
True.Fatigue is often one of the most debilitating symptoms reported by people with lupus.
The Lupus Foundation of America has been present at every step of the Food and Drug Administration’s (FDA) initiative to better incorporate the patient voice into the drug approval and regulatory process. As part of these efforts the lupus community completed a survey to share their perspective on living with lupus with the FDA. Results of this survey indicated that fatigue ranked as the top symptom that had the most impact on well-being. The Foundation is a strong believer that treatments developed must address the most important issues to people living with lupus.
How many people across the country have signed up to be Lupus Foundation of America advocates to ensure that the voices of people with lupus are heard by federal and state leaders?
Nearly 40,000 people have signed up to advocate on behalf of people with lupus.
The voices of people with lupus are critical to protecting access to medications, and advocating for increased funding for lupus research and education programs. Most recently, more than 150,000 letters were sent urging Congress to address the challenges in accessing hydroxychloroquine and chloroquine caused by COVID-19.
Together we are making lupus visible. From educating people about the impact of lupus, to advocating to ensure access to medications and funding research to better understand the most serious complications of lupus, we are making a big impact to improve the lives of people with lupus. Please consider making a donation to continue this momentum and help us solve the cruel mystery of lupus.