In fact, autoimmune disease is as much of a medical frontier today as syphilis or tuberculosis was in the nineteenth century - Meghan O'Rourke
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"Today, researchers believe that they have discovered some eighty to a hundred autoimmune disorders, including disorders as various as lupus, multiple sclerosis, type 1 diabetes, and rheumatoid arthritis. But exact numbers are hard to come by, because researchers still don’t agree on how to define an autoimmune disease, and find it hard to come up with objective measures.
Even the term “autoimmune disease” may be imprecise: we don’t know in every case whether autoimmune dysfunction is the cause of the disease, rather than, say, a consequence. Then there’s the complexity of the immune system. Thyroid patients tend to be preoccupied with antibodies, but Rose, who now runs the Center for Autoimmune Disease Research at Johns Hopkins, notes that one culprit in Hashimoto’s might be the T-lymphocyte—you could have a low antibody count and still be quite sick, or a high antibody count and feel fine. All this uncertainty adds to the shadowiness of the experience.
In fact, autoimmune disease is as much of a medical frontier today as syphilis or tuberculosis was in the nineteenth century. And yet some researchers say that the number of cases is rising at almost epidemic rates. The American Autoimmune Related Diseases Association (AARDA) estimates that as many as fifty million Americans suffer from autoimmunity, which makes it one of the most prevalent categories of disease, ahead of cancer. It is a leading cause of illness in young women. (Three-quarters of autoimmune patients are women.)
Some researchers—devotees of “bored immune system” theory—ascribe the rise to our newly hygienic world: with too little to do, our immune system turns on itself. Others think it’s the opposite problem: our immune system is overstimulated by the chemicals and toxins in our environment, confusing those molecules with molecules native to the body. The explanation could involve both, or neither.
My experience of feeling unwell for years before I got a diagnosis turned out to be typical. According to AARDA, it takes an average of nearly five years (and five doctors) for a sufferer to be given a diagnosis. Patients can end up consulting different specialists for different symptoms: a dermatologist, an endocrinologist, an immunologist, a neurologist, a rheumatologist.
A lot of people with autoimmune diseases would like to see the establishment of clinical autoimmune centers, where a single doctor would coördinate and oversee a patient’s care, as at a cancer center. (Israel now has one, the first of its kind.) Virginia Ladd, the president and executive director of AARDA, told me that funding is a problem: donors tend to give to specific diseases, and, because few people understand the connection between M.S. and ulcerative colitis and Hashimoto’s, no one gives to “autoimmunity” as a category. (Eighty-five per cent of Americans can’t name an autoimmune disease.) As it is, many clinicians assume that the patient, who is often a young woman, is just one of the “worried well”...
Worrying about being crazy is part of many autoimmune sufferers’ lives. Even after diagnosis, you’re often trapped in an epistemological maze, not least because autoimmune diseases tend to overlap. Besides, if the experience of autoimmunity is not just in your head, it is also not just in your body. Nortin Hadler, a professor of rheumatology at U.N.C.-Chapel Hill, talks about the consequences of “negative labelling”: when you give patients a diagnosis, they tend to feel sicker than they did without one. Focusing on symptoms, some studies suggest, can make them seem more severe.
And so the person suffering from chronic illness faces a difficult balancing act. You have to be an advocate for yourself in the face of medical ignorance, indifference, arrogance, and a lack of training. (A 2004 Johns Hopkins study found that nearly two-thirds of doctors surveyed felt inadequately trained in the care of the chronically ill.) You can’t be deterred when you know something’s wrong. But you’ve also got to be willing to ask how much is in your head—and whether an obsessive attention to your symptoms is going to lead you to better health. The chronically ill patient has to hold in mind two contradictory modes: insistence on the reality of her disease, and resistance to her own catastrophic fears...
There are still moments when I mourn my old robust state of health. I look at the photograph by my desk, and remember playing in the sun on summer vacation. I remember getting up early during those long months with the feeling that, like the boy in Robert Lowell’s poem “Waking Early Sunday Morning,” I sat “like a dragon on / time’s hoard.” I remember going downstairs before anyone had woken to sit with my book and a bowl of cereal. Later, the dog and I would go out for a walk up the dirt road by our cabin, under the tall New England sugar maples. I’d throw the tennis ball for him, feeling the wet-cool dirt and gravel under my bare feet.
And I remember being so lost in the sun and the dog’s joy and my pleasure in these hours of freedom that I had no sense that I lived in a body, except as a thing that could feel the sun and the wind and the dog’s cold nose."
Source: Meghan O'Rourke, Excerpt from What's Wrong with Me? The New Yorker, August 26, 2013.
How to Stop Attacking Yourself: 9 Steps to Heal Autoimmune Disease
It you want to cool off inflammation in the body, you must find the source. Treat the fire, not the smoke. In medicine we are mostly taught to diagnose disease by symptoms, NOT by their underlying cause. Functional medicine, the emerging 21st paradigm of systems medicine teaches us to treat the cause, not only the symptoms, to ask the question WHY are you sick, not only WHAT disease do you have.
What’s Wrong with Me?
Illness narratives usually have startling beginnings—the fall at the supermarket, the lump discovered in the abdomen, the doctor’s call. Not mine. I got sick the way Hemingway says you go broke: “gradually and then suddenly.” One way to tell the story is to say that I was ill for a long time—at least half a dozen years—before any doctor I saw believed I had a disease.
3 Things That Wreck Your Hormones
When it comes to your hormones, there are many ways diseases can screw things up. By far, the most common is when the immune system attacks your hormone-producing glands. This is called autoimmune disease.
7 Things You Should Know About Autoimmune Diseases
As if living with chronic illness wasn't challenging enough, living with an autoimmune disease can be even more difficult.
Still highly misunderstood by medical professionals and the public alike, autoimmune diseases are characterized by nebulous symptoms that can make diagnoses difficult to come by. Treatments vary, and in some cases rely entirely on behavior changes.
American Autoimmune Related Diseases Association
e American Autoimmune Related Diseases Association is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical and efficient manner.
Autoimmune Advocacy Alliance
Autoimmune diseases affect as many as 1 in 5 people living in the United States. That’s more than 50 million individuals. Our alliance is a community of patients, family members, advocacy groups and healthcare professionals dedicated to a common cause — raise awareness, educate the public, and advocate for those in need.
We are the Autoimmune Advocacy Alliance.
Here you will find a list of blogs about many autoimmune diseases: personal stories about living with an autoimmune disease.
Autoimmune Encephalitis Alliance
The Autoimmune Encephalitis Alliance promotes collaboration to improve care, find a cure and create community so that no one faces autoimmune encephalitis alone.
AutoimmuneMom.com was born out of a frustration with a lack of online information about autoimmune conditions beyond the surface-level articles and blog posts, even on the top health websites. Believing there must be a way to develop content that dug into current research and examined deeper questions, the planning for the site began.
We created our society to provide support for families and patients affected with autoimmune diseases.UnknownIf you have been doing research on autoimmune diseases, you probably found that most of the information being published is extremely complex and hard to understand. We have taken the time to gather information on many autoimmune diseases and tried to make it easier to understand (know the signs of autoimmune disease).
One rheumatologically challenged girl's journey through life and the maze of the medical system.
AutoImmunity Community is a message board dedicated to the courageous people battling any of the over 60 autoimmune diseases, and is especially beneficial for those with multiple conditions. Friends and family are always welcome, as well as those who simply suspect they have an autoimmune disease.
Autoimmunity Research Foundation
Patients are no longer waiting for current medical practice to catch up with today’s understandings in metagenomics and microbiology. They are looking for ways to take steps to recover now, not two decades from now.
Center for Immunology and Infectious Diseases
Investigating the regulation of immunity and the mechanisms that contribute to disease, as well targeting autoimmune and inflammatory conditions and identifying new approaches to defeating the world’s most significant infectious threats
Sharing resources, advice, helping others find a voice and become empowered and engaged patients. Working hard to improve medical education and further the concept of participatory medicine. Raising awareness for Autoimmune Arthritis and Autoinflamatory diseases.
Hi, my story is similar to many people with an autoimmune disease in that it started out slowly and was undiagnosable for many years. I had many tests and visited many different kinds of specialists until finally about 10 years after the first symptoms began I finally got a diagnosis.
My story is probably also the same as others with autoimmune conditions as I was told there is no cure.
Our mission is to support the IG community through education, communication and advocacy.
International Foundation for Autoimmune Arthritis
We are committed to eliminating the adversity caused by Autoimmune Arthritis diseases by conducting patient-led research, providing wellness education, & uniting resources that will raise global awareness & improve the quality of life for those affected by these diseases.
Autoimmune diseases now affect 24 million people and include rheumatoid arthritis, lupus, multiple sclerosis, thyroid disease, inflammatory bowel disease and more. These are often addressed by powerful immune suppressing medication and not by addressing the cause. That’s like taking a lot of aspirin while you are standing on a tack. The treatment is not more aspirin or a strong immune suppressant but removing the tack.
Life in the Autoimmune Lane
With this blog I hope to accomplish a couple of things. One is the therapeutic aspect of getting it all out so it’s not jumbling around in my mind driving me crazy, and two, if anyone out there is battling an autoimmune disease they can know that they’re not alone. All of your fears and frustrations I share.
PANDAS Network is dedicated to improving the diagnosis and treatment of children with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome).
The PBCers Organization is a wonderful source of education and support for those who suffer from Primary Biliary Cirrhosis and other autoimmune liver diseases.
The Autoimmune Protocol
The Autoimmune Protocol (AIP) is a diet used to heal autoimmune disease and inflammatory disease. From my research I’ve read that this diet helps heal leaky gut and allows the digestive tract to heal and recover from damage and assaults from certain foods.
The Best Autoimmune Disorder Blogs
The thing about Autoimmune disorders is that people rarely have just one.
We are making a huge list of great Autoimmune Blogs for those of us who are blessed with more than one Autoimmune Disorder.
The Immune Renewal Foundation
The Immune Renewal Foundation is a non profit charitable organization whose mission consisting of complimentary, dual goals:
•Raising public awareness (particularly in the autoimmunity communities) of immune suppression procedures...
•Providing financial assistance (in the form of grants) to eligible autoimmunity sufferers lacking insurance coverage and/or lacking sufficient, liquidate-able assets to pay the high costs of the HSCT procedure...
The Paleo Mom
Sarah’s personal experiences with autoimmune disease is the reason for the large amount of autoimmune-related content on her blog and the reason why her first two books are focused on how to modify a paleo diet to reverse autoimmune disease.
Autoimmune diseases are more frequent in women than in men. It is felt that the estrogen of females may influence the immune system to predispose some women to autoimmune diseases. Furthermore, the presence of one autoimmune disease increases the chance for developing another simultaneous autoimmune disease.
There are more than 80 types of autoimmune diseases, and some have similar symptoms. This makes it hard for your health care provider to know if you really have one of these diseases, and if so, which one. Getting a diagnosis can be frustrating and stressful. Often, the first symptoms are fatigue, muscle aches and a low fever. The classic sign of an autoimmune disease is inflammation, which can cause redness, heat, pain and swelling.