What is the role of genetics in lupus?
- Genes do play a role in the predisposition to the development of lupus. There are dozens of known genetic variants linked to lupus. These genes impact both who gets lupus and how severe it is.
- 20 percent of people with lupus will have a parent or sibling who already has lupus or may develop lupus. About 5 percent of the children born to individuals with lupus will develop the illness.[1]
Although lupus can develop in people with no family history of lupus, there are likely to be other autoimmune diseases in some family members.[1]
One of three patients responding to our survey reported they had another autoimmune disease in addition to lupus, and almost half had a relative with lupus.
How long does it take to get diagnosed with lupus?
- There are many challenges to reaching a lupus diagnosis. Lupus is known as “the great imitator” because its symptoms mimic many other illnesses. Lupus symptoms can also be unclear, can come and go, and can change.
- On average, it takes nearly six years for people with lupus to be diagnosed, from the time they first notice their lupus symptoms.[5]
- A majority (63%) of people with lupus surveyed report being incorrectly diagnosed. Of those reporting incorrect diagnosis, more than half of them (55%) report seeing four or more different healthcare providers for their lupus symptoms before being accurately diagnosed.[5]
What are the biggest burdens of living with lupus?
Responding to our survey, most lupus patients reported that they are coping well with lupus (78%), and that other family members are understanding and supportive (72%).[4]
84% people with lupus name other family members as their primary support network.
Participants cited pain (65%), lifestyle changes (61%), and emotional problems associated with lupus (50%) as the most difficult parts of coping with lupus.[4]
What is the state of lupus awareness?
- While lupus is a widespread disease, awareness of the disease lags behind many other illnesses. 63% of Americans surveyed have never heard of lupus or know little or nothing about this disease and its symptoms beyond the name indicating there is significant opportunity and need for continued public education.[9]
- Over half of respondents (61%) believed it takes six months or less for a person to be accurately diagnosed with lupus—significantly underestimating the time it takes to receive an accurate lupus diagnosis.[9]
Key source documents:
[1] Pons-Estel GJ, Alarcón GS, Scofield L, Reinlib L, Cooper GS. Understanding the epidemiology and progression of systemic lupus erythematosus. Semin Arthritis Rheum. 2010 Feb;39(4):257-68. doi: 10.1016/j.semarthrit.2008.10.007. Epub 2009 Jan 10. Review.
[2] Izmirly PM, Parton H, Wang L, McCune WJ, Lim SS, Drenkard C, Ferucci ED, Dall’Era M, Gordon C, Helmick CG, Somers EC. Prevalence of Systemic Lupus Erythematosus in the United States: Estimates From a Meta-Analysis of the Centers for Disease Control and Prevention National Lupus Registries. Arthritis Rheumatol. 2021 Jun;73(6):991-996. doi: 10.1002/art.41632. Epub 2021 Apr 23. PMID: 33474834; PMCID: PMC8169527.
[3] Yen E, Singh R. Brief Report: Lupus-An Unrecognized Leading Cause of Death in Young Females: A Population-Based Study Using Nationwide Death Certificates, 2000-2015. Arthritis & Rheumatology. 2018;70(8):1251-1255. doi:10.1002/art.40512
[4] Daly R, Al Sawah S, Foster S, et al. FRI0420 Health Related Quality of Life in Lupus Differs by How Patients Perceive their Health and How Often They Experience Flares: Findings from a Cross-Sectional Online Survey in the United States. Annals of the Rheumatic Diseases 2015;74:578-579. https://ard.bmj.com/content/74/Suppl_2/578.3 (accessed October 21, 2021).
[5] Al Sawah S, Daly RP, Foster S, Naegeli A, Benjamin K., Doll H., Bond G, Moshkovich O, Alarcón G. Understanding Delay in Diagnosis, Access to Care, and Satisfaction with Care in Lupus: Findings from a Cross-Sectional Online Survey in the United States. Presented at the European League Against Rheumatism (EULAR) 2015 Annual Conference. June 2015. Rome, Italy.
[6] Barber, M. and Clarke, A. (2017). Socioeconomic consequences of systemic lupus erythematosus. Current Opinion in Rheumatology, 29(5), pp.480-485.
[7] Carter, E., Barr, S., & Clarke, A. (2016). The global burden of SLE: prevalence, health disparities and socioeconomic impact. Nature Reviews Rheumatology, 12(10), 605-620. doi: 10.1038/nrrheum.2016.137
[8] Meacock, R., Dale, N., & Harrison, M. (2013). The Humanistic and Economic Burden of Systemic Lupus Erythematosus. Pharmacoeconomics, 31(1), 49-61. doi: 10.1007/s40273-012-0007-4
[9] Lupus Awareness Survey for the Lupus Foundation of America (2019) [Executive Summary].Washington, DC. https://www.lupus.org/news/2019-lupus-awareness-survey-summary. June 25, 2019.
