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The Autoimmune Epidemic |
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 Imagine, if you can: the tingling foot and ankle that turns out to be the beginning of the slow paralysis of multiple sclerosis. Four hundred thousand patients. Excruciating joint pain and inflammation, skin rashes, and never-ending flu-like symptoms that lead to the diagnosis of lupus. One and a half million more. Relentless bouts of vertigo -- the hallmark of Ménière's. Seven out of every one thousand Americans. Severe abdominal pain, bleeding rectal fissures, uncontrollable diarrhoea, and chronic intestinal inflammation that define Crohn's disease and inflammatory bowel disease. More than 1 million Americans. More than 2 million patients. Dry mouth so persistent eight glasses of water a day won't soothe the parched throat and tongue and the mysterious swallowing difficulties that are the first signs of Sjögren's. Four million Americans. And, with almost every autoimmune disease, intolerable, life-altering bouts of exhaustion. If fatigue were a sound made manifest by the 23.5 million people with autoimmune disease in America, the roar across this country would be more deafening than that of the return of the seventeen-year locusts.
And yet, despite the prevalence of autoimmune disease, surveys show that more than 90 percent of people cannot summon the name of a single autoimmune disease when asked to name one specifically.
Think of it -- other than walkathons for multiple sclerosis, how many fundraising walks or lapel ribbons have you seen for autoimmune disease in general? Nearly 24 million Americans are suffering from an autoimmune illness, yet nine out of ten Americans cannot name a single one of these diseases. It boggles the mind.
Each of these nearly 100 autoimmune diseases derails lives. Taken collectively, these diseases, which also include type 1 diabetes, Graves' disease, vasculitis, myasthenia gravis, connective tissue diseases, autoimmune Addison's disease, vitiligo, rheumatoid arthritis, hemolytic anemia, celiac disease, and scleroderma are now the Number Two cause of chronic illness in America and the third leading cause of Social Security disability behind heart disease and cancer. (Acquired immune deficiency syndrome, or AIDS, by contrast, is not an autoimmune disease; in fact, it is entirely different. In AIDS a virus attacks the immune system and destroys it, whereas in autoimmune disease, the immune system leads the attack, mistaking the body's tissue for an invader and turning on the body itself.)
Autoimmune diseases are the eighth leading cause of death among women, shortening the average patient's lifespan by fifteen years. Not surprisingly, the economic burden is staggering: autoimmune diseases represent a yearly health-care burden of more than $120 billion, compared to the yearly health-care burden of $70 billion for direct medical costs for cancer.
To underscore these numbers, consider: while 2.2 million women are living with breast cancer and 7.2 million women have coronary disease, an estimated 9.8 million women are afflicted with one of the seven more common autoimmune diseases: lupus, scleroderma, rheumatoid arthritis, multiple sclerosis, inflammatory bowel disease, Sjögren's, and type 1 diabetes. All of these can lead to potentially fatal complications.
Or slice these statistics another way: while one in 69 women below the age of fifty will be diagnosed with breast cancer, according to estimates, as many as one in nine women of childbearing years will be diagnosed with an autoimmune illness, which strike three times as many women as men -- and most often strike patients in their prime. According to the National Institutes of Health, autoimmune disease affects far more patients than the 9 million Americans who have cancer and the 16 million with coronary disease.
"The Western Disease": A Rising Epidemic Underrecognized and Underaddressed
Even as autoimmune diseases remain underrecognized and underaddressed, the number of patients afflicted with these illnesses has been steadily growing. Yet few of today's practicing physicians are aware of the escalating tsunami of epidemiological evidence that now concerns top scientists at every major research institute around the world: evidence that autoimmune diseases such as lupus, MS, scleroderma, and many others are on the rise and have been for the past four decades in industrialized countries around the world.
Mayo Clinic researchers report that the incidence of lupus has nearly tripled in the United States over the past four decades. Their findings are all the more alarming when you consider that their research has been conducted among a primarily white population at a time when many researchers believe lupus rates are rising most significantly among African Americans.
Over the past fifty years multiple sclerosis rates have tripled in Finland. Rates have likewise been rising in Scotland, England, the Netherlands, Denmark, and Sweden, where the number of people with MS has been rising at nearly 3 percent a year. Multiple sclerosis rates in Norway have risen 30 percent since 1963, echoing trends in Germany, Italy, and Greece, where MS rates have doubled over the past thirty to forty years.
Rates of type 1 diabetes are perhaps the most telling. Data over the past forty years show that type 1 diabetes, a disease in which immune cells attack the insulin-producing beta cells in the pancreas, has increased fivefold. The story regarding childhood-onset type 1 diabetes is more disturbing. Studies show that the number of children with type 1 diabetes is skyrocketing, with rates increasing 6 percent a year in children four and under and 4 percent in children aged 10 to 14.
Rates of numerous other autoimmune diseases -- scleroderma, Crohn's disease, autoimmune Addison's disease, and polymyositis -- show the same alarming pattern.
As with all epidemiological research, it can be more art than science to tease out what percentage of these rising rates is the result of more people being diagnosed with a disease because physicians are more aware of it, versus the increase from a genuine rise in the number of people falling ill. Yet the researchers behind these epidemiological studies hold that something more than an improved ability among doctors to diagnose autoimmune diseases is driving these numbers upward.
Norwegian epidemiologists, for instance, argue that rising rates are "due to a real biological change of the disease" rather than being caused solely by better diagnostics and are concerned by the higher occurrence of autoimmunity in urban than in rural areas. Swedish and German researchers concur that enhanced diagnostics alone cannot explain today's significant increases in MS.
Type 1 diabetes researchers insist that today's rapid rise in this disease cannot be explained by either better diagnostics or by more people suddenly becoming genetically susceptible to type 1 diabetes; rather, a change in environmental factors is the "more plausible explanation." At the Mayo Clinic researchers are beginning to ask if rising rates of lupus are the result of an increased exposure to environmental triggers of some unknown origin. Because autoimmune disease is spreading in almost every industrialized nation, scientists the world over have dubbed it "the Western disease."
A Growing Autoimmune Patient Load, An Autoimmune-Disease Crisis in the Making
While epidemiological studies provide a global portrait of an autoimmune-disease crisis in the making, it is through patients' eyes that it takes on more personal meaning. And nowhere is this more evident than at the offices of Dr. Michelle Petri, clinical director of the Johns Hopkins Lupus Center, at the Johns Hopkins Outpatient Center in downtown Baltimore, Maryland. Dr. Petri is a heavy hitter in the field of rheumatology and a nationally known speaker on lupus. Many of the people she treats have waited months for an appointment in order to confirm a diagnosis or gain better treatment for such rheumatic autoimmune diseases as lupus and antiphospholipid syndrome. Some of them are local residents who live merely a few blocks away from her office, while other patients fly thousands of miles to see her.
Over the course of her thirty-year career, Petri has witnessed a dramatic rise in patients with lupus. In the 1960s there were only 150 to 200 lupus patients registered in the Hopkins Rheumatology Clinics. Today, there are 1,700 lupus patients registered from the immediate neighbourhood alone. "The population in Baltimore is going down, and yet the number of people coming to our clinic from Baltimore with autoimmune disease is going up," she says.
In an administrative building nearby sits the lupus clinic records room. In the twenty-by-twenty-foot space loom four walls of filing cabinets -- enough to easily fill up the four walls in your local 7-Eleven -- packed with patient files that, twenty years ago, would have fit neatly into a few metal drawers. Although Petri has no way of conducting formal epidemiologic research through her clinic, the continued rise in the percent of patients afflicted in her own small urban area is, she says, a "very disturbing" sign.
Certainly, some of the increase that Petri and other clinicians are seeing in lupus is due to the improved treatment many patients receive through kidney dialysis and transplants, which help them live longer (the longer patients survive, the larger the overall patient number). And the skill with which physicians diagnose lupus has improved somewhat in many large metropolitan hospital centers. However, this increase in lupus "is so enormous," says Petri, part of it can only be explained by an increase in the incidence of lupus itself.
Petri's emphatic tone reveals her concern for her patients' well-being as well as her frustration over how little physicians understand about why so many people's immune systems are attacking their own healthy tissue. The fact that so many front-line practitioners are ill trained in how to diagnose these diseases can result in patients facing costly delays -- both physically and emotionally -- in getting the help they need.
One of these patients was Kathleen Arntsen, a 44-year-old sales professional from Verona, New York. After five years of searching for a diagnosis for what would turn out later to be myasthenia gravis, a disease in which sufferers develop severe muscle fatigue and disabling weakness, Kathleen was told by a doctor she'd been to eight times, "We've given you every test known to man except for an autopsy. Would you like one of those too?" For half a decade, she says, "I was treated like an absolute fruitcake. No one could tell me what was wrong with me, much less treat me."
Arntsen's story is not unusual. The average patient with autoimmune disease sees six doctors before attaining a correct diagnosis. Recent surveys conducted by the American Autoimmune Related Diseases Association reveal that 45 percent of patients with autoimmune diseases have been labelled hypochondriacs in the earliest stages of their illnesses. Some of this, no doubt, has to do with the fact that 75 percent to 80 percent of autoimmune disease sufferers are women, who are more easily dismissed by the medical establishment when hard-to-diagnose symptoms arise. In half of all cases, women with autoimmune disease are told there is nothing wrong with them for an average of five years before receiving diagnosis and treatment. Patients -- most especially women -- are often left feeling confused and marginalized, or worse, labelled as psychosomatic malingerers.
Arntsen was fortunate to find her way eventually to Johns Hopkins University's neuromuscular clinic and later to Michelle Petri for confirmation, consultation, and validation regarding her polyautoimmune disorders, which include lupus, Sjögrens, Graves' thyroid disease, APS, psoriasis, Raynaud's disease, and myasthenia gravis. Yet despite having an accurate set of diagnoses, Arntsen's autoimmune illnesses have forced her to give up almost everything she once equated with normal life in order to preserve the stamina to get through each day. Once a healthy young woman on a full scholarship to Colgate University, where she was captain of the women's rugby team, Arntsen now has to stop and pick up each knee as she goes up the stairs. "I coexist," she says, "with bone-gnawing pain." For years, her long flame of red hair, which once reached her tailbone, turned scarce and thin, the fallout of her autoimmune thyroiditis, coupled with drug side effects. In the past decade she has spent almost a year and a half in the hospital during her most severe lupus flares. Although she is carefully monitored, there is little the medical establishment can offer Kathleen for her lupus and myasthenia gravis other than steroids, a healthy diet, and boatloads of rest -- especially since no new U.S. Food and Drug Administration-approved drugs have been developed for lupus in more than forty years.
Kathleen's debility and exhaustion, which have taken a permanent toll on her life and career, will never go away. A top-performing sales rep for an insurance company while in her thirties, Arntsen, who used to run three miles a day, now lives on Social Security disability -- which, she says ruefully, allows time for "my new full-time job -- seeing specialists." She gets going each day by around noon and spends what stamina she has left volunteering at the Lupus Foundation of Mid and Northern New York, which has become her "baby," although it can hardly begin to make up for the fact that "the chance to be a mother has been stolen from me." The best Kathleen and her husband of fifteen years can hope for is that with the careful monitoring of diet, stress, and sleep, she will have more good days than bad.
To look at Kathleen, however, you would never guess what she has been through or what she faces each morning at the start of her day. Like many people who suffer from autoimmune diseases, Kathleen's symptoms remain largely invisible. "Because we go through ups and downs, you might see us on a good day, between severe flares, when we seem to be perfectly fine," she says. "You don't know that we've just spent six weeks in hell." Few can imagine, she adds, that behind her bedroom door even on one of these good days, Kathleen has to take twenty-two medications about an hour before she tries to get up, just so she can handle the pain when her feet hit the floor. "By the time you run into me at the grocery store at two o'clock in the afternoon and say hello to me, I'm ready to nod and say, 'Oh, I'm fine, how are you?'"
© 2008 Donna Jackson Nakazawa.
*****
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Comments |
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on August 06 2008 13:57:30
I have been saying for YEARS that the medical community are working in silos - we SHOULD be asking why do we not understand better the way the immune system works as a whole - it would help to answer questions about auto-immune response and even shed more light on immune system and cancer!! |
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