Lupus is a complex autoimmune disease where the body’s immune system mistakenly attacks its own tissues and organs. While genetics can play a role in predisposition, understanding the journey to a lupus diagnosis, particularly concerning the Lupus Diagnosis Age, is crucial for patients and their families. This article delves into the typical timeline for diagnosis, the hurdles patients face, and the factors contributing to delays.
One significant aspect to consider is the role of genetics in lupus. Research indicates that genes contribute to the likelihood of developing lupus. In fact, approximately 20% of individuals with lupus have a family member who also has lupus or may develop it. Furthermore, the genetic influence can extend to the severity of the condition. While lupus can manifest in individuals without a family history, autoimmune diseases are often observed within their families. This genetic component, while not deterministic, highlights a potential area of research into lupus diagnosis age and potential early identification for those with a family history.
However, diagnosing lupus is notoriously challenging, regardless of lupus diagnosis age. Lupus is often called “the great imitator” because its symptoms can mirror those of many other illnesses. Adding to the complexity, lupus symptoms are often vague, can fluctuate in intensity, and may come and go unpredictably. This makes it difficult to pinpoint lupus as the underlying cause, leading to significant delays in diagnosis.
Data reveals that, on average, it takes nearly six years from the onset of lupus symptoms to receive an accurate diagnosis. This extended period can be incredibly frustrating and concerning for individuals experiencing health issues. A significant majority, around 63%, of lupus patients report receiving incorrect diagnoses initially. Among those misdiagnosed, over half consulted four or more healthcare providers before finally receiving the correct lupus diagnosis. This highlights not only the complexity of the disease but also the need for greater awareness and understanding of lupus among healthcare professionals to improve the lupus diagnosis age timeline.
The burdens of living with lupus are considerable, encompassing physical, emotional, and lifestyle adjustments. While many patients demonstrate resilience and coping mechanisms, the diagnostic delay itself adds to the overall burden. Understanding the typical lupus diagnosis age and the reasons behind the delay can empower patients to advocate for themselves and seek appropriate medical attention sooner. Increased awareness about lupus, its varied presentations, and the challenges in diagnosis is vital for both the public and the medical community to shorten the time to diagnosis and improve the lives of those living with lupus.
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] Wallace, D.J., & Hahn, B.H. (2013). Dubois’ lupus erythematosus and related syndromes. (8th ed.) Philadelphia, PA: Elsevier Saunders.
[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.
