Authors: Donna Jackson Nakazawa
CHAPTER ONE: THE RED FLAG DISEASE
Statistically, Jan’s chances of having APS at the age of forty-nine:
Current statistics from the National Center for Health Statistics state that 14 out of 100,000 women develop ovarian cancer and that 9 out of 100,000 women develop leukemia. Although antiphospholipid antibody syndrome was discovered relatively recently, emerging statistics (http:www.hughes-syndrome.org/overview.htm) reveal that as many as 1 in 500 individuals may actually suffer from APS. Experts believe that as many as 90 percent of those affected are women. While the actual frequency of APS in the general population remains unknown due to a lack of epidemiological data, doctors estimate that one-fifth of all “young” strokes (defined as occurring in someone under the age of 45) are due to APS. In obstetrics it is estimated by some doctors that up to 25 percent of all women with two or more spontaneous miscarriages have APS. For more information see the above website or www.apsfa.org/faq/faq1.htm 9 (accessed July 18 2007).
In fact, recent studies reveal that antiphospholipid antibodies:
Although antiphospholipid antibodies are found in 2 to 5 percent of the population, not all those who have these antibodies go on to develop the disease, though many do. Because APS is a recently understood autoimmune disease, researchers are not yet certain they know of all the autoantibodies involved. For more on the complexities of predicting who will have the disease based on autoantibody testing in autoimmune diseases in general, please see chapter 5, “The Autoimmune Disease Detectives.”
Four hundred thousand patients:
http://www.nationalmssociety.org/site/PageServer?pagename=HOM_RES_research_factsheet (accessed May 11, 2007).
One and a half million more:
http://www.lupus.org/education/stats.html (accessed April 11, 2007).
Seven out of every one thousand Americans:
http://oto.wustl.edu/men/mn1.htm (accessed April 11, 2007).
24 Four million Americans:
http://www.sjogrens.org (accessed April 11, 2007).
And yet, despite the prevalence:
Roper ASW. Knowledge of autoimmune disease. Report prepared for the American Autoimmune Related Diseases Association, February 2003. Available from the American Autoimmune Related Diseases Association, 22100 Gratiot Avenue, East Detroit, MI 48021-2227, (586) 776-3900, [email protected].
Taken collectively, these diseases:
American Autoimmune Related Diseases Association. Who we are. Press release; 3. Available from the American Autoimmune Related Diseases Association, 22100 Gratiot Avenue, East Detroit, MI 48021-2227, (586) 776-3900, [email protected].
the third leading cause of Social Security:
Ibid.; 2.
Autoimmune diseases are the eighth leading cause:
Walsh SJ, Rau LM. Autoimmune diseases: A leading cause of death among young and middle-aged women in the United States. Am J of Pub Health 2000 Sep;90(9):1463–6.
shortening the average patient’s lifespan:
On March 16, 2005, I attended a congressional briefing in Washington, D.C., at which Dr. Bhagirath Singh, scientific director of the Canadian Institutes of Health Research, Institute of Infection and Immunity, presented this statistic.
Not surprisingly, the economic burden:
American Autoimmune Related Diseases Association. Who we are. Press release; 1.
yearly health-care burden of $70 billion:
http://www.cdc.gov/nccdphp/publications/factsheets/Prevention/cancer.htm (accessed May 24, 2007).
while 2.2 million women are living with breast cancer:
Marcus AD. Medical student takes on a rare disease—his own: Andy Martin donates tissue, then struggles to grow tumor cells in a lab dish. Wall Street Journal, 2004 Apr 1. Available from http://online.wsj.com/article_email/SB108077194020270691-IBjg4NmlaB3oZuoZXmGaqaAm4.html (accessed May 12, 2007).
and 7.2 million women have coronary disease:
http://www.americanheart.org/downloadable/heart/1166712318459HS_StatsInsideText.pdf (accessed May 12, 2007).
an estimated 9.8 million women are afflicted:
These seven diseases are estimated to affect the following number of Americans: lupus, 1.5 million; scleroderma, 300,000; rheumatoid arthritis, 2.1 million; multiple sclerosis, 400,000; inflammatory bowel disease, 1 million; type 1 diabetes, 300,000 to 500,000; Sjögren’s, up to 4 million.
Or, slice these statistics another way:
http://www.cancer.gov/cancertopics/factsheet/Detection/probability-breast-cancer (accessed May 12, 2007).
as many as one in nine women of childbearing years:
Estimates hold that nearly 24 million Americans suffer from autoimmune disease and that three-quarters of these sufferers are women, which means that roughly 18 million women have autoimmune disease in America. There are approximately 164 million American females, which means that roughly one in nine American women suffers from autoimmune disease.
which strike three times as many women:
http://www.aarda.org/women.php (accessed May 12, 2007).
According to the National Institutes of Health:
http://www.cdc.gov/cancer/npcr/npcrpdfs/about2004.pdf (accessed May 12, 2007).
the 16 million with coronary disease:
http://www.americanheart.org/downloadable/heart/1166712318459HS_StatsInsideText.pdf (accessed May 12, 2007).
Yet few of today’s practicing physicians are aware:
National Institutes of Health, Autoimmune Diseases Coordinating Committee. Progress in autoimmune diseases research. Report to Congress, 2005 Mar; foreword by Elias A. Zerhouni, MD. Available from http://www.niaid.nih.gov/dait/pdf/ADCC_Final.pdf (accessed May 12, 2007).
Mayo Clinic researchers report that the incidence of lupus:
Uramoto KM et al. Trends in the incidence and mortality of systemic lupus erythematosus, 1950–1992. Arthritis Rheum. 1999 Jan;42(1):46–50. Researchers report that over the past four decades, the incidence of lupus has nearly tripled in the United States, and possible explanations include an increased exposure to environmental triggers, in addition to an improvement in survival rates among patients and somewhat improved screening techniques.
Over the past fifty years multiple sclerosis rates:
Midgard R et al. Incidence of multiple sclerosis in More and Romsdal, Norway from 1950 to 1991. An age-period-cohort analysis. Brain. 1996 Feb; 119(Pt 1):203–11. This study cites that the incidence of multiple sclerosis in Finland increased “threefold” between 1979 and 1992, “corroborating the increasing trend reported from Scotland, the United Kingdom, the Netherlands, Denmark and the western coast of Norway.”
Sweden, where rates of MS:
Sundstrom P et al. Incidence (1988–97) and prevalence (1997) of multiple sclerosis in Vasterbotten County in northern Sweden. J Neurol Neurosurg Psychiatry. 2003 Jan;74(1):29–32. Umea University Hospital neurologists report that MS rates between 1988 and 1997 in Vasterbotten County, Sweden, were twice as high as incident rates between 1974 to 1988, with “a yearly 2.6% increase in prevalence between 1990 and 1997…mainly attributable to a higher incidence [rather] than mortality.”
Multiple sclerosis rates in Norway:
Edland A et al. Epidemiology of multiple sclerosis in the county of Vestfold, eastern Norway: Incidence and prevalence calculations. Acta Neurol Scand 1996 Feb–Mar;93(2–3):104–9. Hospital researchers report that in the county of Vestfold, eastern Norway, multiple sclerosis rates rose 30 percent between 1963 and 1983. Studies on MS among western Norwegians show a twofold increase in MS during the same period. The study’s four authors conclude that the “increase in prevalence of MS in western Norway is due to a real biological change of the disease” and cannot be due solely to better diagnostics. Dahl OP et al. Multiple sclerosis in Nord-Trondelag County, Norway: A prevalence and incidence study. Acta Neurol Scand 2004 Jun;109(6):378–84. In the county of Nord-Trondelag, not only is MS increasing, but researchers write “the prevalence is among the highest ever in Norway.”
echoing trends in Germany, Italy, and Greece:
Poser S et al. Increasing incidence of multiple sclerosis in South Lower Saxony, Germany. Neuroepidemiology 1989;8(4):207–13. Researchers from Göttingen University report that in Lower Saxony the prevalence of multiple sclerosis doubled between 1969 and 1986 and write that “new handling of early cases [or better diagnostics] by practicing physicians can hardly explain this significant increase. In consideration of similar reports from all over the world biological exogenous factors are suspected but remain to be identified.” Rosati G et al. Incidence of multiple sclerosis in the town of Sassari, Sardinia, 1965 to 1985: Evidence for increasing occurrence of the disease. Neurology 1988 Mar;38(3):384–8. Researchers report that MS rates in Sardinia more than doubled between 1965 and 1973. Piperidou HN et al. Epidemiological data of multiple sclerosis in the province of Evros, Greece. Eur Neurol 2003;49(1):8–12. In the province of Evros, Greece, researchers from the Department of Neurology at Aristotle University report that the prevalence rate of MS increased from about 1 in 100,000 people in 1974 to 39 per 100,000 people in 1999. The authors note that while some of this may be the result of causes other than increasing susceptibility to environmental triggers of disease, this overall rate increase points to “the possibility of a variation in risk [causing] factors of the disease.”
Rates of autoimmune thyroiditis have risen steadily:
National Institutes of Health, Autoimmune Diseases Coordinating Committee. Progress in autoimmune diseases research. Report to Congress, 2005 Mar; 43.
Rates of type 1 diabetes:
EURODIAB ACE
Study Group. Variation and trends in incidence of childhood diabetes in Europe. Lancet 2000 Mar 11;355(9207):873–6. Childhood-onset type 1 diabetes is also increasing annually at a rate of 3 percent in children between the ages of five and nine. Researchers emphasize that “the rapid rate of increase in children aged under 5 years is of particular concern,” citing that this “rapid increase in incidence is not readily explained by shifts in the frequency of susceptibility genes, and change in environmental factors is a more plausible explanation.” Also see Onkamo P et al. Worldwide increase in incidence of type 1 diabetes—the analysis of the data on published incidence trends. Diabetologia 1999 Dec, 42(12):1395–403.
Rates of numerous other autoimmune diseases:
Steen V et al. Incidence of systemic sclerosis in Allegheny County, Pennsylvania. A twenty-year study of hospital-diagnosed cases, 1963–1982. Arthritis Rheum 1997 Mar;40(3):441–5. In this study researchers report that cases of scleroderma (SSc), a progressive autoimmune disease in which blood vessels narrow to the degree that they prevent blood flow to the body’s tissues, have doubled over a recent twenty-year period. Authors write that although this trend had to do with improved detection and medical record techniques, higher incidence rates in women suggest that there “may have been a true increase in the incidence of SSc.”
Crohn’s disease, an inflammatory autoimmune disease of the bowels, virtually unheard of until the 1930s, now afflicts 15 out of 100,000 people in highly industrialized nations such as the United States, England, and the countries of Scandinavia. Researchers cite that “the incidence of Crohn’s disease has increased strikingly in many areas” around the world and are especially concerned by the fact that immigrants who move to industrialized nations from less developed countries (where the prevalence of Crohn’s disease is quite low) suddenly begin to have Crohn’s disease at the elevated rates found in their adopted urban landscape. For more on this see Farrokhyar FA et al. Critical review of epidemiological studies in inflammatory bowel disease. Scand J Gastroenterol 2001 Jan;36(1):10.
Norwegian researchers report a rising incidence of autoimmune Addison’s disease, or autoimmune adrenal insufficiency, a disease in which the body destroys the cells in its own adrenal glands. Autoimmune adrenal failure, they say, has “certainly increased over the last 50 years.” See Lovas K and Husebye ES. High prevalence and increasing incidence of Addison’s disease in western Norway. Clin Endocrinol (Oxf) 2002 Jun;56(6):787–91.
Other diseases show the same alarming pattern. In a 1990 Pennsylvania study, cases of polymyositis, an autoimmune disease of the muscles, resulting in severe muscle weakness, more than tripled between 1973 and 1982. Oddis CV et al. Incidence of polymyositis-dermatomyositis: A 20-year study of hospital diagnosed cases in Allegheny County, PA 1963–1982. J Rheumatol 1990 Oct;17(10): 1329–34.
Norwegian epidemiologists:
Edland A et al. Epidemiology of multiple sclerosis in the county of Vestfold, eastern Norway: Incidence and prevalence calculations. Acta Neurol Scand 1996 Feb–Mar;93 (2–3):108.
Type 1 diabetes researchers:
EURODIAB ACE Study Group. Variation and trends in incidence of childhood diabetes in Europe. Lancet 2000 Mar 11;355(9207):875.
At the Mayo Clinic researchers:
Uramoto KM et al. Trends in the incidence and mortality of systemic lupus erythematosus, 1950–1992. Arthritis Rheum 1999 Jan;42(1):48.