Lupus

Tuesday, May 15, 2012

Lupus Statistics

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.

http://www.arthritis-pain-cure.com/lupus_graphs.html

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:
  • More people have lupus than cerebral palsy, cystic fibrosis and multiple sclerosis combined.
  • Women are nine times more likely to develop lupus than men.
  • The average age of the lupus patient is between 15 and 45 years old.
Lupus Statistics, Prevalence:
  • About 1,500,000 Americans have a form of lupus.
  • More than 16,000 Americans develop lupus each year.
  • Systemic lupus erythematosus occurs in 1 out of every 600 Caucasian women, 1 out of every 450 Latin women and 1 out of every 200 African-American women.
  • African American women rank first with lupus cases, followed by American Indian women second, Hispanic women third and Caucasian women fourth.
  • Lupus is two to three times more common among African Americans, Hispanics, Asians, and Native Americans.
Lupus Statistics, Types of Lupus:
  • About 65 percent of systemic lupus erythematosus patients will have skin involvement, including malar rashes and discoid lesions.
  • About 10% of cutaneous lupus patients will develop systemic lupus erythematosus.
  • About 30% of systemic lupus erythematosus patients will develop lupus nephritis.
  • About 30% of systemic lupus erythematosus patients will develop heart and/or lung problems.
  • Only 20% of lupus patients test positive for RF (rheumatoid factor).
Lupus Statistics, Comorbid:
  • About 50 percent of systemic lupus erythematosus patients will have a neuropsychiatric disorder such as seizures, memory loss, headaches, or depression.
  • Women with systemic lupus erythematosus have an increased risk of developing heart disease.
  • Between 40 and 60 percent of systemic lupus erythematosus patients have some form of photosensitivity.
  • About10% of people with lupus will have symptoms of one or more other connective tissue diseases.
Lupus Statistics, Mortality:
  • Only 50% of lupus patients lived 4 years after diagnosis in the 1950s. Currently between 80 and 90 percent of lupus patients survivor 10 years after diagnosis.
  • Lupus deaths have increased 61 percent since 1980.
  • Lupus deaths among African-American women have increased 70% since 1980.
  • About 15 percent of arthritis deaths are from systemic lupus erythematosus.
  • Almost 37 percent of systemic lupus erythematosus deaths are among people between 15 and 44.
  • Lupus deaths are five times higher for women than men.
  • Lupus deaths are three times higher for blacks than for whites.
Lupus Statistics, Misc.:
  • About 5 percent of the children born to individuals with lupus will develop the illness.
  • 50 percent of lupus patients see at least 3 doctors before being diagnosed.
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.


 Economic ImpactEconomic Impact 
  • A study reported in October 2008 found that the average annual direct health care cost of patients with lupus was $12,643.  The study's authors also determined that the mean annual productivity costs (lost hours of productive work) for participants of employment age (between the ages of 18 and 65) was $8,659. Thus, the mean annual total costs (combining direct costs and productivity costs for subjects of employment age) was $20,924.
  • According to a Lupus Foundation of America membership survey, one in four patients receive their health care through a government-sponsored program, such as Medicare or Medicaid.
  • Two of three lupus patients reported a complete or partial loss of their income because they no longer are unable to work fulltime due to complications of lupus.
  • One in three have been temporarily disabled by the disease, and one in four currently receive disability payments.
  • Awareness
  • While lupus is a widespread disease, awareness of the disease lags behind many other illnesses.
  • In a nationwide poll of 1,000 adults conducted for the LFA, 38% said they are somewhat or very familiar with lupus, while 39% have only heard of the name of the disease and 22% have never heard of lupus.
  • In an another survey, only four of ten young adults ages 18-24 claimed to be aware of lupus, even though the disease often strikes during the childbearing years.
  • While 65% of respondents to this survey claimed awareness of lupus, only 20% could correctly answer basic questions about the disease.
Diagnosis and Treatment
  • A LFA survey of its members suggests that more than half of those afflicted with lupus suffered at least four years, and saw three or more doctors before obtaining a correct diagnosis of lupus.
  • Nearly half of the survey participants (49%) received their diagnosis of lupus after being examined by a rheumatologist, a medical specialist who treats diseases of the connective tissue.
  • Four of ten lupus patients are treated by three or more doctors, and take six or more medications to treat symptoms of the disease.
Other Autoimmune Diseases
  • One of three patients responding to the LFA membership survey reported they had another autoimmune disease in addition to lupus, and almost half had a relative with lupus.
  • Autoimmune diseases like lupus often run in families.
Coping
  • Most lupus patients reported that they are coping well with lupus (78%), and that other family members are understanding and supportive (72%).
  • People with lupus named other family members (84%) and friends (72%) as their primary support network.
  • The survey participants cited pain (65%), lifestyle changes (61%), and emotional problems associated with lupus (50%) as the most difficult factors for coping with lupus.
Back to LFA Newsroom homepage

http://www.lupusmctd.com/index.php?topic=1915.0;wap2 
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.

Editorial Note:
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)

http://www.arthritis.org/mortality-sle.php
Published in Arthritis and Rheumatism, Volume 54, Issue 8
July 2006

What problem was studied?
Systemic lupus erythematosus (SLE, also known as lupus) is a multisystem, autoimmune disorder that can be severe and life threatening. It has long been suspected that people with SLE have an increased mortality rate compared with people who do not have SLE. This suspicion has been shown to be true in several small studies. Recently, a large team of researchers, including Arthritis Foundation-funded researcher Rosalind Ramsey-Goldman, MD, DrPH, of Northwestern University in Chicago, have assembled data from the largest group of people with SLE ever studied and analyzed mortality rates.

What was done in the study?
Researchers from 23 lupus centers in 7 countries compiled information regarding 9,547 people with SLE. Data were collected on each patient’s date of birth, sex, date of SLE diagnosis, date of entry into the study, date of death, if applicable, and cause of death. The number of observed deaths was then compared with the number of expected deaths according to general population mortality rates. The ratio of observed to expected deaths is called the standardized mortality ratio (SMR).

What were the study results?
Of the total study group, 1,255 deaths occurred during the observation period. The overall SMR for people with SLE was 2.4, meaning that a person with lupus was 2.4 times more likely to die of any cause than a demographically matched person without lupus. Demographically matched means that the comparator group was of the same geography, age, sex and time in history as the person being studied.

Lupus was the official cause of death in 291 cases; however, the most common cause of death was circulatory disease (with an SMR of 1.7), including all types of heart disease, arterial disease and strokes. People with lupus were less likely to die of cancer than the general population except for two circumstances: non-Hodgkin’s lymphoma had an SMR of 2.8 and lung cancer had an SMR of 2.3. Although the total number of people who died of nephritis (kidney disease) and infections other than pneumonia were small, these conditions as causes of death in SLE were higher than the comparator groups, with SMRs of 7.9 and 5.0, respectively.

Patients who were female, younger than 25 years or had a disease duration of less than one year all had particularly high SMRs. Thus, early in the disease course, the risk of death is particularly high and is usually related to the disease itself or treatment for the disease. It also was found that in the United States (the only participating country with ethnic/race data available), African-Americans had a higher SMR than Caucasians (2.6 versus 1.4).

What is the relevance to people with lupus?
Although the death rate among people with lupus has drastically declined in the past decade because of better and early treatment, this study demonstrates a high incidence of death in young women early in their disease course and a high incidence of death due to circulatory disease. People with SLE should use this information to work closely with their doctors to mitigate these risks through close monitoring for worsening disease activity and treatment complications.

In addition, people with SLE should be careful to avoid unnecessary dangers that can lead to circulatory disease, such as smoking, high-fat or high-calorie diets, lack of exercise or being obese.

Bernatsky S, Bovin J-F, Joseph L, et al. Mortality in systemic lupus erythematosus. Arthritis Rheum 2006;54:2550--7.




Death Rates Still High in Lupus Nephritis






Long-term mortality remains high among patients with lupus nephritis despite improvements in overall care for systemic lupus erythematosus (SLE), a Danish cohort study showed.

Compared with the general Danish population, the standardized mortality ratio among a cohort of 100 patients with lupus nephritis was 6.8 (95% CI 4.9 to 9.4), according to Mikkel Faurschou, MD, of Copenhagen University Hospital, and colleagues.


Mortality was even higher among patients who were younger than 30 at the time of their first renal biopsy (SMR 10.9, 95% CI 5.6 to 21), the researchers reported in the June
Arthritis Care & Research.
Nephritis has been reported to afflict 27% to 45% of patients with SLE, and although aggressive immunotherapy has brightened the prognosis for patients with this systemic autoimmune disease, many still progress to end-stage renal disease.
Data on long-term outcomes in lupus nephritis remain sparse, however. So Faurschou and colleagues examined mortality and end-stage renal disease in a cohort of 100 patients diagnosed between 1971 and 1995 and followed for a median duration of 14.7 years.
Almost all of the patients were white and more than two-thirds were women. Median age at the time of their SLE diagnosis was 28 years; median age at the time of their first renal biopsy was 30 years.
Most patients had WHO class III or IV nephritis, and treatments used for induction of remission included cyclophosphamide, azathioprine, and corticosteroids.
A total of 37 patients died during the follow-up period.
Cardiovascular and cerebrovascular events were the cause of death in 46% of deaths occurring within five years of the first renal biopsy and in 42% of deaths in the years afterwards.
Infections accounted for 23% of deaths prior to five years and for 8% of deaths thereafter. Active SLE accounted for 31% of deaths before five years and for 12% of deaths occurring later.
While the highest mortality was seen in younger patients, those who were 30 or older at the time of renal biopsy also were at risk (SMR 6, 95% CI 4.2 to 8.8).
Mortality also was higher for patients diagnosed during the 1970s (SMR 9, 95% CI 4.7 to 17.1) compared with the 1990s (SMR 6.6, 95% CI 3.1 to 13.8). The authors speculate that rather than better SLE treatments, improved survival for patients with a more recent diagnosis may reflect more effective cardiovascular treatment strategies and better management of infectious complications.
The current study has both strengths and limitations.
Multiple regression analysis adjusting for age and sex determined the following baseline characteristics as being independent risk factors for death:
  • Systolic blood pressure ≥180 mm Hg, HR 3.3 (95% CI 1.4 to 8, P=0.007)
  • Class III (focal segmental) nephritis, HR 8 (95% CI 3.1 to 20.6, P<0.0001)
  • Class IV (diffuse proliferative) nephritis, HR 38.9 (95% CI 7.1 to 212.7, P<0.0001)
End-stage renal disease developed in 25 patients, and cumulative renal survival at five, 10, 15, and 20 years was 87%, 83%, 76%, and 73%, respectively. The finding that cases of end-stage renal disease continued to be observed long after diagnosis refutes earlier data suggesting that most cases occur within the first decade, the researchers said.
Multivariate analysis found these baseline characteristics to be independent risk factors for end-stage renal disease:
  • Serum creatinine level ≥140 ╬╝moles/L, HR 3.6 (95% CI 1.5 to 8.6, P=0.003)
  • Systolic blood pressure ≥180 mm Hg, HR 4.2 (95% CI 1.4 to 12.7, P=0.01)
  • Duration of nephritis ≥6 months before first biopsy, HR 4.2 (95% CI 1.7 to 10.3, P=0.002)
The fact that elevated systolic blood pressure was predictive of both outcomes underscores the importance of hypertension control in these patients, according to the investigators.
In addition, "both delayed renal biopsy and serum creatinine level ≥140 ╬╝moles/liter came out as strong predictors of [end-stage renal disease], confirming the negative prognostic impact of an increased serum creatinine level at the time of the first renal biopsy and delayed intervention," they observed.
The use of cyclophosphamide for induction therapy -- more common in the 1980s and '90s -- did not appear to influence patient or renal survival. An explanation for this, the investigators said, could be that the overall improved survival seen during the study period was a result of more effective cardiovascular strategies and better management of infections.
Strengths of the study include its almost complete tracking of study subjects. Limitations include the study's retrospective design and its lack of data on postinduction therapy, which prevented the investigators from being able to assess the impact of newer treatments and maintenance regimens on outcome.
"Our findings indicate that focal segmental histopathology at disease onset constitutes an important risk factor for death among [lupus nephritis] patients," they concluded.
"Moreover, the current data highlight the importance of early intervention, blood pressure control, and long-term follow-up."
The lead author's work was supported by the Scandinavian Journal of Rheumatology, and one co-author was supported by the Novo Nordisk Foundation.
 

Statistics on Lupus from the LFA

http://www.lupus.org/webmodules/webarticlesnet/templates/new_newsroomreporters.aspx?articleid=247&zoneid=60

Cases of Lupus
  • The Lupus Foundation of America estimates that 1.5 million Americans, and at least five million people worldwide, have a form of lupus.
  • Although lupus can strike men and women of all ages, 90 percent of individuals diagnosed with the disease are women.  Most people will develop lupus between the ages of 15-44. 
  • Systemic lupus accounts for approximately 70 percent of all cases of lupus. In approximately half of these cases, a major organ, such as the heart, lungs, kidneys or brain, will be affected.  Cutaneous lupus (affecting only the skin) accounts for approximately 10 percent of all lupus cases.  Drug-induced lupus accounts for about 10 percent of all lupus cases and is caused by high doses of certain medications.  The symptoms of drug-induced lupus are similar to systemic lupus; however, symptoms usually subside when the medications are discontinued.
  • In approximately 10 percent of all cases, individuals will have symptoms and signs of more than one connective tissue disease, including lupus. A physician may use the term "overlap syndrome" or "mixed connective tissue disease" to describe the illness.
  • 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.
  • Lupus is two to three times more prevalent among women of color -- African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians and other Pacific Islanders -- than among Caucasian women.  
  • It is difficult to determine the annual number of new lupus cases, or the number of individuals who die from health complications of the disease. However, due to improved diagnosis and disease management, most people with the disease will go on to live a normal life span.  However, it is believed that between 10-15 percent of people with lupus will die prematurely due to complications of lupus. 
  • The U.S. Centers for Disease Control and Prevention issued a report in May 2002 which indicated that deaths attributed to lupus increased over a 20-year period, particularly among African American women ages 45-64. However, it is not clear if the rise is the result of an actual increase in lupus mortality or better identification and reporting of deaths due to complications of the disease. Trends in Deaths from SLE -- United States, 1979 - 1998
Economic Impact
  • A study reported in October 2008 found that the average annual direct health care cost of patients with lupus was $12,643.  The study's authors also determined that the mean annual productivity costs (lost hours of productive work) for participants of employment age (between the ages of 18 and 65) was $8,659. Thus, the mean annual total costs (combining direct costs and productivity costs for subjects of employment age) was $20,924.
  • According to a Lupus Foundation of America membership survey, one in four patients receive their health care through a government-sponsored program, such as Medicare or Medicaid.
  • Two of three lupus patients reported a complete or partial loss of their income because they no longer are unable to work fulltime due to complications of lupus.
  • One in three have been temporarily disabled by the disease, and one in four currently receive disability payments.
Awareness
  • While lupus is a widespread disease, awareness of the disease lags behind many other illnesses.
  • In a nationwide poll of 1,000 adults conducted for the LFA, 38% said they are somewhat or very familiar with lupus, while 39% have only heard of the name of the disease and 22% have never heard of lupus.
  • In an another survey, only four of ten young adults ages 18-24 claimed to be aware of lupus, even though the disease often strikes during the childbearing years.
  • While 65% of respondents to this survey claimed awareness of lupus, only 20% could correctly answer basic questions about the disease.
Diagnosis and Treatment
  • A LFA survey of its members suggests that more than half of those afflicted with lupus suffered at least four years, and saw three or more doctors before obtaining a correct diagnosis of lupus.
  • Nearly half of the survey participants (49%) received their diagnosis of lupus after being examined by a rheumatologist, a medical specialist who treats diseases of the connective tissue.
  • Four of ten lupus patients are treated by three or more doctors, and take six or more medications to treat symptoms of the disease.
Other Autoimmune Diseases
  • One of three patients responding to the LFA membership survey reported they had another autoimmune disease in addition to lupus, and almost half had a relative with lupus.
  • Autoimmune diseases like lupus often run in families.
Coping
  • Most lupus patients reported that they are coping well with lupus (78%), and that other family members are understanding and supportive (72%).
  • People with lupus named other family members (84%) and friends (72%) as their primary support network.
  • The survey participants cited pain (65%), lifestyle changes (61%), and emotional problems associated with lupus (50%) as the most difficult factors for coping with lupus. 
  •  
  • Lupus: What You Need To Know
    Written by Wendy Leonard

    Lupus is a  “major women's health disease that has too long gone devastatingly under-recognized.”  ~~U.S. Department of Health & Human Services

    The task is daunting – the responsibility is huge. How do we, as a society, meet the public health goal of reducing health disparities in our nation by the year 2010, which was set forth by Federal agencies including the Centers for Disease Control, the National Institutes of Health, the Food & Drug Administration, the Office of Population Affairs, and the Agency for Healthcare Research and Quality?

    The answer, for your consideration, is the following: Investing precious healthcare dollars in lupus research would bring our country exponentially closer to realizing our nation’s healthcare goal of reducing health disparities. The return on investment would be tremendous.

    Here’s some background: In just the past four years, the Department of Health & Human Services (which oversees the Centers for Disease Control and Prevention) estimates that the number of Americans suffering from lupus has skyrocketed from 239,000 to upwards of 1.4 million – making lupus more common than leukemia, muscular dystrophy, cerebral palsy, multiple sclerosis and cystic fibrosis. 

    “It’s important to get a handle on lupus,” explains the CDC’s Medical Epidemiologist, Dr. Charles Helmick. “Understanding Lupus is important for understanding other autoimmune diseases, and, understanding why there are such disparities by race and sex in lupus.”

    What type of health disparities? For example, “Black, middle-aged women, age 45 to 64, not only had the highest death rate, but they had the biggest increase in death rates over the past 20 years. It went up nearly 70 percent, and that's startling information,” states Dr. Helmick.

    This totally egregious gap in health disparities additionally includes that fact that:
    ·       Over 36% of lupus deaths occur between the ages of 15 and 44, thus striking our nation’s people during the prime of their lives.
    ·       Lupus is 3 times more common in African-American women (who are also 3 times more like to die from it) than Caucasian women.
    ·       Women die from lupus at 5 times the rate of men.
    ·       Lupus primarily develops in young women of childbearing years, although men and children also develop this disease.
    ·       And, there’s been a staggering 70% increase in the death rate of African-American women with lupus, as stated by the CDC’s Dr. Helmick.

    What exactly is Lupus? Lupus is a devastating autoimmune disease in which your immune system launches a brutal attack against your own body’s cells, tissues and organs– including your heart, lungs, joints, nervous system, skin, blood vessels and brain. 
    The CDC describes lupus as a major cause of arthritis that can “affect multiple organs and cause widespread symptoms”.  Lupus, together with other forms of arthritis, has a dramatic impact on the U.S. economy of nearly $125 billion a year:
    •    $42.6 billion in direct medical costs
    •    $82.2 billion in loss of productivity and other indirect costs.

    In fact, according to the National Institutes of Health’s “Strategic Research Plan to Reduce and Ultimately Eliminate Health Disparities” – which specifically addresses Lupus – research is the key to advancing our understanding of the development and progression of diseases and disabilities that contribute to health disparities in minority populations. This plan, incidentally, was designed to work in tandem with Health People 2010. As noted by Dr. Helmick, “This is important because of the health objectives for the nation. The Healthy People 2010 document aims to reduce and actually eliminate disparities.”

    Unfortunately, according to Health, United States, 2005 – the 29 annual report on the health status of the Nation prepared by the Secretary of the Department of Health & Human Services for the President and Congress, “Even as progress is made in improving both quantity and quality of life...It is equally important to keep in mind that these improvements have not been equally distributed by income, race, ethnicity, education and geography.”

    These finding are echoed by the National Institutes of Health, Strategic Research Plan to Reduce and Ultimately Eliminate Health Disparities Fiscal Years 2002 -2006, which found that: “Despite notable improvements in the overall health of the Nation in the last two decades, there continue to be striking disparities in the burden of illness and death experienced by African Americans, Hispanics, Native Americans, Alaska Natives, Asians, and Pacific Islanders.”

    This travesty is not surprising, because according the National Institutes of Health’s Data Book, the prior Congress actually decreased the portion of the total health dollar allocated to research from 5.8 cents in 2004 to 5.5 cents in 2005.

    What can be done – right now? We are urging members of Congress to send a letter to the House and Senate Department of Defense (DOD) Appropriations Subcommittees in support of line-item funding for lupus research in the Defense Appropriations bill; there is indeed precedence for this, as there are a handful of diseases that currently receive line-item research funding.

    Who are we? We’re the Alliance for Lupus Research (ALR). Launched in 1999 and chaired by Robert Wood Johnson IV, the ALR has already committed over $42 million dollars to supporting Lupus research – making it the largest private source of funds for Lupus research in the world.  Of note, our Board of Directors pays all operating costs; thus, ensuring that 100% of all donations are allocated to the most promising, scientifically valid research projects.

    For more information about lupus and the Alliance for Lupus Research, and to learn more about what you can do to help, please go to www.lupusresearch.org, or call us directly at (212) 218–2840. Thank you so much for supporting this vitally important public health issue.

    EVALUATION OF THE MORTALITY IN SYSTEMIC LUPUS
    ERYTHEMATOSUS (SLE): ANALYSIS OF 2021 PATIENTS

    F. Gharibdoost, S. Akbarian, M. Akbarian, F. Shahram, A. Nadji, A.R. Jamshidi and F. Davatchi
    Department of Rheumatology, Shariati Hospital, School of Medicine, Tehran University of Medical Sciences, Tehran,
    Iran
    http://diglib.tums.ac.ir/pub/magmng/pdf/1041.pdfAbstract- Lupus erythematosus (LE) is an autoimmune disease. The mortality rate and causes of death are different in
    various countries. The present study is done to find out the causes of mortality in the systemic lupus erythematosus (SLE)
    patients in lupus unit of Rheumatology Research Center and other wards of Shariati Hospital. This study was retrospective
    according to medical records of patients who were referred to Lupus Unit of Rheumatology Research Center, ICU,
    Gynecology and Nephrology wards of Shariati hospital during 10 years, from 1991 till 2001. Of 2021 recorded patients'
    files, 165 (7.8%) deaths were already recorded. 84.8% were female and 15.2% male. The duration of disease was 36±12
    months. The mean duration of follow up from entering the study till time of death was 25.9±16.8 months. The causes of
    mortality were as follows: infection (12.1%), respiratory (8.5%), CNS (13.9%), kidney (3.6%), malignancy (1.2%),
    unknown (7.8%), active lupus (3%). Infection accompanied with other causes (27.9%), respiratory with other causes
    (11.5%), CNS with other causes (5.5%) and renal with other causes (4.8%). Infection is the most common cause of death in
    SLE Iranian patients, which is compatible with some multicentric studies. But in some previous studies myocardial
    infarction was reported as the main cause of death.
    Acta Medica Iranica, 41(1): 62-65; 2003
    Key Words: Systemic lupus erythematosus (SLE), mortality, IRAN
    INTRODUCTION
    Systemic lupus erythematosus (SLE) is an
    autoimmune disease with unknown etiology in which
    various immune reactants are produced against nucleus,
    cytoplasm components and cell wall. It causes tissue
    damages in all body organs. This disease gains one
    thousand different aspects and various clinical and
    laboratory features in a way one could not find two
    patients with lupus diagnosis alike. The first report
    published, 707 Iranian patients studied, however, the
    causes of mortality were not considered (1). Urowitz
    reported the causes of death in 665 patients with SLE as
    follow: Infection (32%), active lupus (16%), vascular
    accident (15%), sudden death (8%), malignancy (6.5%),
    unknown (10%) (2). Dubois and his colleagues come to
    this conclusion that the pattern of mortality has changed
    in patients who suffer from SLE. The kidney and CNS
    involvements as causes of death have decreased. Kelley
    reviewed the causes of mortality in some studies and
    concluded infection and severe nephritis as the most
    common causes of mortality in SLE patients.
    Received 18 December 2001; accepted 11 December 2002
    Correspondence:
    F. Gharibdoost, Department of Rheumatology, Shariati Hospital, School
    of Medicine, Tehran University of Medical Sciences, Tehran, Iran
    Tel: +98 21 8025966
    Fax: +98 21 8026956
    E-mail: Egharibdoost@hotmail.com rrc@sina.tums.ac.ir
    He considered the other manifestations of SLE, which
    were generally fatal as follows: carditis, pneumonitis,
    pulmonary hypertension, cerebritis, cardiovascular
    accident, myocardial infarction, intestinal perforation
    due to vasculitis and extracranial arterial thrombosis (4).
    The present study is done to find out the causes of
    mortality in the SLE patients at Rheumatology Research
    Center, Shariati Hospital, Tehran, Iran.
    MATERIALS AND METHODS
    This study was retrospective according to medical
    records of patients who were admitted in Rheumatology
    Research Center, ICU, Gynecology and Nephrology
    wards of Shariati hospital during 10 years (1991-2001).
    In Rheumatology Research Center for each patient
    in addition to establishing accurate usual medical file, a
    specific page, which defines 266 clinical and laboratory
    parameters is recorded and is specific for each patient.
    Patients regularly were visited just in appointment in
    SLE clinic. In each visit including positive points in the
    specific document, patients' complaints, clinical
    findings and laboratory results and opinion of
    professors in rheumatology research center about
    condition of disease, method of continuing treatment
    and required laboratory tests were recorded in the file.
    Acta Medica Iranica, Vol 41, No 1 (2003)
    63
    On the basis of records, after elimination of some
    cases from 1991-2000, 2021 patients with SLE were
    investigated. The mortality rate was 7, 8 percent (165
    patients), so study was performed in case series method
    where there is no requirement for accurate statistical
    calculations and defining the number of samples. In
    order to analyze data we used SPSS software, chisquare,
    t-test for analyzing and assigning maximum,
    minimum, SD and comparison of various mean data
    were used. In cases with less number of samples,
    Fisher's exact test was used. When assigning prevalence
    percent of various findings, SE was calculated
    (Standard error for percentage).
    RESULTS
    Of 2021-recorded patients in lupus unit of
    Rheumatology Research Center and the other associated
    wards in Shariati hospital, 165 (7.8%) deaths were
    Table 1. The cause of death in lupus patients
    Case of death Case Percent
    I Infection 66 40%
    Only infection 20 12.1%
    With other causes 46 27.9%
    II CNS 32 19.4%
    Only CNS 23 13.9%
    With other causes 9 5.5%
    III Respiratory 33 20%
    Only respiratory 14 8.5%
    With other causes 19 11.5%
    IV Kidney 16 8.4%
    Only Kidney 6 3.6%
    With other causes 8 4.8%
    V O.L.R* 7 4.2%
    Only O.L.R 5 3%
    With other causes 2 1.2%
    VI Unknown 6 3.6%
    VII O.N.L.R** 5 3%
    Only O.N.L.R 4 2.4%
    With other causes 1 0.6%
    VIII malignancy 2 1.2%
    * Other lupus related
    ** Other non lupus related
    recorded. Of 2021 patients, 1808 cases (89.5%) were
    female and 213 cases (10.5%) were male. Of 165
    patients who passed away, 140 cases (84.8%) were
    female and 25 cases (15.2%) were male. The average
    age of patients at the time of death was 26 years. The
    most common cause of death was infection (Table 1-7).
    Table 2. Death prevalence evaluation in lupus patients
    according to age
    Gender Cases Percent Real percent Cumulativ
    e
    frequency
    Male 25 15.2 15.2 15.2
    Female 140 84.8 84.8 100
    Total 165 100 100
    Table 3. Total number death prevalence evaluation in lupus
    patients according to age
    Year age Number Percent Real
    percent
    Cumulativ
    e
    frequency
    0-1 7 4.2 4.2 4.2
    11-20 53 31.5 31.5 35.8
    21-30 69 41.8 41.8 77.6
    31-40 27 16.4 16.4 93.9
    41-50 8 4.8 4.8 98.8
    > 50 2 1.2 1.2 100
    Total 165 100 100
    Table 4. Comparison of regular and irregular visiting in
    lupus patients who were died
    Visiting type Cases Percent Cumulative
    frequency
    Irregular 106 64.2 64.2
    Regular 59 35.8 100
    Total 165 100
    Table 5. Prevalence evaluation of various causes of
    mortality in lupus patients who were died
    Cause of death Cases Percent
    Infection 20 12.1
    Respiratory 14 8.5
    CNS 23 13.9
    Kidney 6 3.6
    Other causes associated with lupus 5 3
    Other causes not associated with lupus 4 2.4
    Unknown 6 3.6
    Malignancy 2 1.2
    Infection+other causes 46 27.9
    Respiratory+other causes 19 11.5
    CNS+other causes 9 5.5
    Kidney+other causes 8 4.8
    Other related causes+other causes 2 1.2
    Other related causes+other causes 1 0.6
    Total 165 100
    Evaluation of the mortality in systemic in SLE
    64
    Table 6. Comparison of regular and irregular visiting of
    patients under investigation according to divided causes of death
    Cause of death Irregular
    visiting
    Regular
    visiting
    Total
    Infection+other causes
    41
    62.1
    43.6
    25
    37.9
    49
    66
    45.5
    Respiratory+other causes
    21
    63.6
    22.3
    12
    36.4
    23.5
    33
    22.8
    CNS+other causes
    21
    65.6
    22.3
    11
    34.4
    21.6
    32
    22.1
    Renal+other causes
    11
    78.6
    11.7
    3
    21.4
    5.9
    14
    9.7
    Total
    94
    64.8
    51
    35.2
    145
    100
    Table 7. Comparison duration of disease with regular and
    irregular visiting in patients under investigation
    Visiting type Cases MD SD SE
    Irregular 106 4.3679 3.432 0.333
    Regular 59 0.9746 1.329 0.173
    * SE= Standard error of mean, SD= Standard deviation, MD=
    Mean deviation
    The comparison of two groups who were visited regular and
    irregular and the duration of their disease showed us significant
    relationship (p< 0.05)
    DISCUSSION
    From 2021 patients who were investigated in our
    center from 1991 till 2000, a total of 165 deaths were
    recorded.
    During the period of 11 years, Klom and his
    colleagues studied the causes of death in 229 SLE
    patients with 29% mortality (5). Estes and Christian
    studied 150 patients during eight years with 36%
    mortality (6) , Dubois studied 491 patients in a period of
    13 years with 51% mortality (7) and finally Rosner and
    colleagues reported 21% (8) mortality in 1103 patients.
    Thus by comparison of available data, the death
    expectation is highly more among Iranian patients. This
    result may be due to unknown consequences of many
    expired patients. In our center it was impossible to
    identify exact expired patients, so we did not identify
    the causes of death (6) to (7).
    The 10 years survival of patients were 60% to 95%
    in different reports. Because of unknown consequences
    of many expired patients, it was impossible in
    identifying survival of Iranian patients. The average age
    of patients at the time of death was 26 years that in
    comparison with (2,3) other countries revealed that
    death in Iranian patients occured in lower ages. In
    recent study the average disease period, from onset to
    death was 36±12 months.
    The mean duration of follow up, from entering the
    study till time of death was 25.9±16.8 months. This
    time in Rosner's study, totally for all patients from time
    of entering to study till last visit or death, was
    calculated 43.5±35.2 months.
    The gender distribution of expired patients in our
    study was 84.8% female and 15.2% male. In
    comparison with 89.5% female and 10.5% male in total
    SLE patients, there was no significant difference in
    gender distribution in expired patients. From the
    viewpoint of death causes, infection was the most
    common cause of death (infection 12.1%, infection with
    other causes 27.9%) in our lupus patients. This is
    compatible with multicenteric study of Rosner and his
    colleagues that was 33% (8).
    Although in some other studies the rate of infections,
    as a cause of death, was less than this report (12-19% by
    Dubois).
    The most important point in recent studies is
    introduction of infections as the most common cause of
    death in patients, and believe that although high rate of
    fatal infections in lupus patients during 3rd and 4th
    decades could be relevant to absence of antibiotics,
    these remarkable rate of infections during recent years
    may mostly be related to immunosuppressive therapies
    and high does of corticosteroids.
    Thus we could conclude that increasing dose of
    corticosteroides could lead to an increasing in
    prevalence rate of infections and consequently death of
    patients and this aspect was proven in other studies.
    Therefore, the necessity of cautiously using
    combination therapy with steroids is more evident than
    before.
    REFERENCES
    1. Akbarian M, Shahram F, Davatchi F. Clinical
    manifestation of SLE in Iran. Analysis of 707 patients.
    Journal of Medical Council of Islamic Republic of Iran
    1993; 1:39-51.
    2. Urowitz MB. Mortality in systemic lupus
    erythematosus. XIX ILAR Congress Of Rheumatology,
    Proceeding book 1997: 390-391
    Acta Medica Iranica, Vol 41, No 1 (2003)
    65
    3. Gladman DD, Urowitz MB. Prognostic subsets and
    mortality in SLE. In: Wallace D.J. Dubois, Lupus
    Erythematosus 5 th edition 1997; 1213-1227.
    4. Hahn BH. Management of SLE, in: Ruddy S, Harris
    ED, Sledge CB. Kelley's Text Book of Rheumatology 6
    th edition.W.B. Saunders Company, Philadelphia 2001;
    1125-1143.
    5. Kellum RE, Haserick JR. Systemic Lupus
    Erythematosus, A statistical evaluation of mortality
    based on a consecutive series of 299 patients. Arch
    Intern Med 1964; 113: 92-99.
    6. Estes D, Christian CL. The maternal history of
    systemic lupus crythematosus by prospective analysis.
    Medicine 1971; 50: 85-95.
    7. Dubis EL, Wierchowiecki M, Cox MB, Weiner JM.
    Duration and Death in systemic lupus erythematosus.
    JAMA 1974; 227: 1399-1402.
    8. Rosner, et al. A multicenter study of outcome in
    systemic lupus erythematosus: II. Causes of death.
    Arthritis Rheum 1982; 25: 612-616. 


    SURVEY SHOWS THE BURDEN OF LUPUS ON WORK AND WALLET
    Print E-mail
    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:
    • 72 percent of patients admit they are not as productive as they could be at work as a direct result of lupus. 
    • Approximately 80 percent of lupus patients say that their condition has caused them to take more sick days. 
    • 59 percent of lupus patients surveyed say that other people think that lupus affects their reliability and dependability. 
    • About two-thirds (69 percent) of patients say they only tell a few co-workers about having lupus.
    “It is important to reinvent yourself in meaningful ways when a chronic illness limits your original life plans,” said Joan Merrill, M.D., chair of the Clinical Pharmacology Research Program at Oklahoma Medical Research Foundation, and consultant to Human Genome Sciences and GlaxoSmithKline. “However, this is hard to do. Friends and family can help by valuing and supporting a new direction or modified goals.”
    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 Survey

    The 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.

    Resources

    People 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 Communications

    GfK 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).
    Inquiries:
    Diana Torres
    (212) 819-4895
    Diana.Torres@edelman.com

     
    1. National Burden of Disease Survey, slide 58, patients statistic “Quit working or retired earlier than planned due to lupus”
    2. National Burden of Disease Survey, slide 58, patient statistic “Reduced the number of hours worked due to lupus”
    3. National Burden of Disease Survey, slide 58, patient statistic “Changed to a less strenuous job due to lupus”
    4. NIH. National Institute of Arthritis and Musculoskeletal and Skin Diseases. Lupus. April 2009. http://www.niams.nih.gov/Health_Info/Lupus/do_i_have_lupus.asp. (“Who get’s lupus?” sub section) Accessed December 1, 2011.
    5. National Burden of Disease Survey, slide 61, (50 percent strongly agree/32 percent somewhat agree), patient statistic “Not working makes me feel that I am not contributing a fair share to the household”
    6. National Burden of Disease Survey, slide 61, (58 percent strongly agree/25 percent somewhat agree), patient statistic “Having to leave my job due to my lupus was devastating to me”
    7. National Burden of Disease Survey, slide 60, patient statistic “Because of lupus, I’m not as productive as I could be at work”
    8. National Burden of Disease Survey, slide 60, patient statistic, “Lupus caused me to take more sick days than I would take if I were not affected by lupus”
    9. National Burden of Disease Survey, slide 51, (26 percent strongly agree/33 percent somewhat agree), patient statistic “People think that lupus affects my reliability and dependability”
    10. National Burden of Disease Survey, slide 60, patient statistic, “I told only a few co-workers about having lupus”
    11. The Us in Lupus. “Together we’re empowered.” http://www.usinlupus.com/lupus-support-group/lupus-and-stress/lupus-facts.html (“Relate well” section)
    12. The Us in Lupus. “Together we’re empowered: Your best work.” http://www.usinlupus.com/lupus-support-group/lupus-and-stress/lupus-facts.html (Para 3)
      [ Back ]
 





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6 comments:

  1. Thank you for the magnitude of time and energy you spent researching and writing this blog. I have researched and gotten a lot of good information, but you covered material I have yet to research. This will be mostvaluable to me as I explain to other Lupus patients, family and friends. Since I no longer work outside the home, I have made it my "WORK" to learn as much as I can about Lupus and other autoimmune diseases; to spread the word and educate people. Fear of the unknown is often worse that the disease. Once people learn what symptoms they can expect, the treatments, and probably most importantly, that they are not alone; they begin to make strides toward living with Lupus. I will refer people to your blog for the benefit of the information they can gain. Again...Thank You!!!

    ReplyDelete
    Replies
    1. Deborah, thank you for taking the time to read and comment on my blog. Your thoughtful comments made me tear up, thank you!! I am so happy to hear that you got info you needed and you are going to share my blog with others. Information is power! xoxo

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  2. Yes, thank you so much for your dedication to research and for educating the public. What I found the most useful as an SLE patient was the statistics related to the mortality and lupus especially related to the cardiac and circulatory system since I have tested positive for inflammation in the lining of my arteries... Blessings to you! It is amazing still how many people still do not know about, understand, or sometimes even believe that lupus is a real, legitimate disease. Thanks! I have a blog as well and would love more "followers".... http://aproverbs31womanwithachronicillness.blogspot.com/ Thanks so much and if we all keep banding together, maybe we will have a ride as big as the MS 150 one day! All it takes is more understanding and more information!

    Diane in OK

    ReplyDelete
    Replies
    1. dmarieok,
      Thank you for taking the time to read and comment on my blog. I hope that one day we will be as well known as MS which is much less common than lupus. My main wish is for a cure for all illness and disease, but I know that is probably an impossible dream. So, in the mean time spreading awareness in knowledge is my life's work. I will check out your blog thank you for sharing. xo

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  3. Hi, I'm Melissa Melvin. My sister lost her battle at 27 yrs old last year from lupus. We had to fight to get lupus as the first cause of death on her death certificate. Thank you so much for posting this blog. I am a 5th grade teacher, but today I'm putting on my businesswoman hat on to try soliciting donations from businesses for the Lupus Foundation. I represent Team Bridget in Charlotte, NC. Your page has been very helpful. However, I can not clearly see the charts... maybe because my computer is so old? Just wondering. Again, thank you and prayers will come your way.

    ReplyDelete
    Replies
    1. I am so sorry about your sister Melissa. I also have a facebook page dedicated to lupus awareness and support. www.facebook.com/Mrs.lupus. Sending you and your family love and prayers. xo

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