I am always very interested in all the statistics I can find about lupus. One of the most interesting stats I have read is that 1 in 185 people in the U.S. have lupus. It is definitely not a rare disease, it is a common illness. I was surprised that there were not many up to date statistics on mortality in lupus patients, with lupus being the cause of death. If not due to direct organ damage, like kidney lupus (lupus nephritis), lupus is not usually given as the cause of death. For example, if someone with SLE dies of cardiac arrest, that may be the only given cause of death, not cardiac arrest due to lupus. Better data and records need to be kept to get a true statistical analysis of lupus death rates. Sorry, I know that this subject can be depressing, however knowledge is power, and we must arm ourselves with as much information as possible.
Informational Lupus Charts and Statistics
Lupus statistics provide a better understanding of the magnitude of lupus and the importance of raising awareness of the fact that lupus is a serious illness. These lupus facts help raise awareness so that the general population can gain a more widespread acceptance and understanding for lupus and other “invisible disabilities.”
These lupus statistics are not intended to be grim or frightening. They are simply fact and figures, statistics about lupus. The purpose of these lupus statistics is to put the seriousness and magnitude of lupus into perspective.
Lupus Statistics, General:
Lupus Statistics, Prevalence:
Lupus Statistics, Types of Lupus:
Lupus Statistics, Comorbid:
Lupus Statistics, Mortality:
Lupus Statistics, Misc.:
Again, these lupus fact statistics are not intended to be grim or frightening. Lupus facts provide a better understanding of the magnitude of lupus and the importance of raising awareness of this serious illness.
LFA Statistics http://www.lupus.org/webmodules/webarticlesnet/templates/new_newsroomreporters.aspx?articleid=247&zoneid=60
|Economic Impact||Economic Impact
Below is statistic charts and information to help you see how the death rate has changed over the years, but till there is a cure, we can never give up hope for our loved ones and for ourselves prplbtfy
Trends in Deaths from Systemic Lupus Erythematosus --- United States, 1979--1998
Systemic lupus erythematosus (SLE) is a serious autoimmune disease of unknown etiology that can affect several organs. Because SLE affects connective tissues and because painful joints and arthritis are among its most common manifestations, this disease is classified with arthritis and other rheumatic diseases (1). SLE is one of the more fatal forms of rheumatic diseases and non-Causcasian race is a risk factor for death from SLE; however, trends in death from SLE have not been analyzed recently. To characterize deaths from SLE, CDC reviewed SLE deaths during 1979--1998. This report presents the results of that analysis, which indicate that marked age-, sex-, and race-specific disparities exist in SLE death rates and that death rates have increased by approximately 70% during the study period among black women aged 45--64 years. Prevention of deaths requires early recognition and diagnosis of SLE and appropriate therapeutic management.
The analysis used National Center for Health Statistics Multiple Cause-of-Death Public Use Data Tapes for 1979--1998. These national mortality statistics were based on data from death certificates filed in state vital statistics offices. Demographic data (e.g., age and race/ethnicity) listed on death certificates were reported by funeral directors, usually from information provided by the decedent's family. Causes of death listed on death certificates were reported by a physician, medical examiner, or coroner by using a format specified by the World Health Organization and endorsed by CDC. An SLE death was defined as any death of a U.S. resident coded with an underlying cause of death of systemic lupus erythematosus (International Classification of Diseases, Ninth Revision, code 710.0). Death rates were calculated by using annual deaths and corresponding U.S. residential population estimates (2). Death rates were calculated for whites and blacks. Rates for other races were not calculated because numbers were too small for meaningful analysis.
During 1979--1998, the annual number of deaths increased from 879 to 1,406, and the crude death rate increased from 39 to 52 per 10 million population, with 22,861 deaths reported during the study period (Table 1). Of all SLE deaths, 36.4% occurred among persons aged 15--44 years. For each year, crude death rates increased with age, were >5 times higher among women than men, and were >3 times higher among blacks than whites. Among black women, death rates were highest and increased most (69.7%) among those aged 45--64 years, with little difference in rates among other age groups (Figure 1).
Reported by: JJ Sacks, MD, CG Helmick, MD, G Langmaid, JE Sniezek, MD, Div of Adult and Community Health, National Center for Chronic Disease Prevention and Health Promotion, CDC.
The findings in this report document marked age-, sex-, and race-specific disparities in SLE deaths. Although SLE mortality is most frequently caused by active SLE or by associated organ failure, infection, or cardiovascular disease from accelerated atherosclerosis (3), some studies suggest that renal disease might account for excess SLE deaths among blacks (4). Differential ascertainment and reporting of SLE deaths by race is possible, but probably does not account for the magnitude of observed differences, especially among different age groups for white and black women.
A higher incidence of SLE among black women might account for the racial differences in death rates. However, no ongoing population-based studies exist that determine how changes in SLE incidence contributed to the increase in the death rate. Beyond a change in incidence, other remediable reasons for an increase in SLE mortality among black women include later diagnosis, problems in access to care, less effective treatments, and poorer compliance with therapeutic regimens (5).
The findings in this report are subject to at least four limitations. First, death rates might be underestimated. Because multiple cause-of-death data were used in this analysis, other causes of death (e.g., kidney disease and heart disease) might have been listed as the underlying cause of death rather than SLE. An additional 17,450 persons who died during 1979--1998 had SLE listed as an associated cause of death on their death certificates. Second, SLE can be difficult to diagnose clinically, and both underdiagnosis and overdiagnosis (e.g., because of positive antinuclear antibody tests) occur (6). However, physicians reporting SLE as the underlying cause of death presumably had sufficient data supporting the diagnosis to cite SLE first instead of other causes. Third, rates for racial/ethnic populations other than white and black were not calculated because numbers were too small for meaningful analysis. These populations might have high rates of SLE (7). Finally, because prevalence estimates for SLE are variable, population death rates were calculated rather than case fatality rates.
Arthritis and other rheumatic conditions are highly prevalent, disabling, and costly (8). SLE accounts for 14.5% of all deaths from arthritis (CDC, unpublished data, 1997) and represents one of these conditions that has premature mortality; approximately one third of deaths from SLE occur among persons aged <45 years. Of all deaths from arthritis, SLE accounts for 44.0% of deaths among persons aged <45 years (CDC, unpublished data, 1997).
Because of SLE's protean manifestations, preventing excess and premature deaths will require clinical suspicion of the diagnosis, early recognition, appropriate therapeutic management, compliance with treatment, and improved treatment of long-term consequences (e.g., renal disease or accelerated atherosclerosis) (9). One of the public health strategies outlined in The National Arthritis Action Plan (8) is to better define issues related to rheumatic conditions such as SLE. Because further research into the causes of the marked age-, sex-, and race-specific disparities in death rates and temporal changes in death rates is necessary, CDC plans to develop a large population-based registry of SLE to monitor trends in SLE incidence and prevalence and better characterize persons with this disease. Studies conducted from this registry will examine why disparities and death rates exist and how mortality from SLE can be reduced.
Mortality Rates in SLE (Systemic lupus erythematosus)
Published in Arthritis and Rheumatism, Volume 54, Issue 8
|SURVEY SHOWS THE BURDEN OF LUPUS ON WORK AND WALLET|
Patients, caregivers face significant financial and professional challenges
ROCKVILLE, Maryland, and RESEARCH TRIANGLE PARK, NC – July 11, 2012 – Results of a Roper survey of the lupus community highlight that in addition to the physical burdens of lupus, the disease can contribute to significant economic challenges among patients and caregivers. Patients with systemic lupus erythematosus (SLE or lupus), caregivers and physicians overwhelmingly agree that career disruptions caused by the challenges of living with lupus often exact a heavy financial and emotional toll, according to the survey.
A majority of patients, supporters and doctors report that people with lupus change career plans because of lupus, which is a chronic and potentially disabling disease. More than half (63 percent) of respondents with lupus quit working or retired earlier than planned, about two-thirds (67 percent) reduced the number hours worked, and 51 percent of patients changed to a less strenuous job.
Lupus can occur at any age, but appears mostly in young people aged 15 to 44 – prime working years. Inability to work seems to weigh heavily on patients, emotionally and financially. For example, 82 percent of patients reported that not working makes them feel they are not contributing their fair share to the household, and 83 percent found it devastating to leave their jobs due to lupus.
Many people with lupus say the disease impacts their productivity and has an undesirable effect on their relationships with co-workers. In fact:
Some people living with lupus have had to think differently about their jobs or careers because they found it difficult to fulfill their responsibilities, due to lupus. As disappointing as this may be, many people living with lupus have been able to find jobs in different or related fields that are more suitable to their situations. There are resources and tips to help you better manage your career, available at UsinLupus.com.
About the National Burden of Lupus SurveyThe national survey was conducted by Gfk Roper Public Affairs and Communications (GfK Roper North America or Roper) from July through September 2011. It was designed to evaluate the daily and long-term impact of lupus on health, family relationships, career and quality of life, and identify potential gaps in communication. Results were drawn from more than 950 people in the lupus community— 502 people who reported being diagnosed with SLE, 204 supporters (family members or friends) of people with lupus and 251 rheumatologists (physicians who specialize in treating lupus). The survey was funded and developed by Human Genome Sciences and GlaxoSmithKline.
This release is the second in a series of reports on the National Burden of Disease Survey. For previous releases please visit: New Survey Reveals Lupus Communication Gap as Many Patients Remain Silent on True Impact of the Disease.
ResourcesPeople with lupus and those who care for them can visit www.usinlupus.com for online support, information and inspiration. For additional information on lupus, visit the Lupus Foundation of America at www.lupus.org, the Lupus Research Institute at www.lupusresearchinstitute.org, the Alliance for Lupus Research at www.lupusresearch.org and the National Institute of Arthritis and Musculoskeletal and Skin Diseases at www.niams.nih.gov. Except for usinlupus.com, the websites listed are external to Human Genome Sciences and GlaxoSmithKline. Human Genome Sciences and GlaxoSmithKline do not have control over the content of the information provided on these websites and therefore do not warrant their accuracy or completeness.
###For more information about Human Genome Sciences, please visit the company’s website at www.hgsi.com.
For more information on GlaxoSmithKline, please visit www.gsk.com.
About GfK Roper Public Affairs & Corporate CommunicationsGfK Roper Public Affairs & Corporate Communications is a division of GfK Custom Research North America. The group specializes in customized public affairs and public opinion polling, media and corporate communications research, and corporate reputation measurement in the United States and globally. In addition to delivering a broad range of customized research studies, GfK Roper Public Affairs & Corporate Communications draws from GfK’s syndicated consumer tracking services, GfK Roper Reports® US and GfK Roper Reports® Worldwide, which monitor consumer values, beliefs, attitudes and behaviors in the United States and more than 25 other countries. The division also serves as the official polling partner of the Associated Press conducting the AP-GfK Poll (www.ap-gfkpoll.com).