by Christine Kerrigan
Autoimmune Disease
In celebration of the Real Authentic Woman, it is our intention to be a continual resource of information for RAW women everywhere . . . and what is a RAW woman, without her health? Autoimmune Disease is a topic that is pertinent to women everywhere, as 75% of those afflicted with an autoimmune disease are women.
I am not a doctor. I am not a healer. I am not a medical expert. However, I have spent the last seventeen years of my life dealing with, adjusting and readjusting to, autoimmune disease – getting knocked down and getting back up – having surgeries, trips to the ER, severe allergic reactions, misdiagnoses, being sent home with doctors shaking their heads . . . periods of time with no medical insurance — and beyond my personal experiences are others I know with autoimmune diseases, my volunteer work, public speaking and research experience, combined with simply experience as a patient – I feel comfortable in doling out the basics. Basics of information that can get our RAW women to stand up and pay attention, take care of themselves, develop this knowledge and continue to pass it along. Knowledge is power, and if we don’t spread it, then we are wasting our time. So here I am.
Have You Heard?
Where to begin when describing autoimmune diseases? There is no one list of symptoms that can encompass all. Each case is different. Each patient is different. Many cases take years to diagnose, after extensive medical testing and a multitude of physicians’ opinions. Most patients, though dealing with any number of symptoms — and in many cases, multiple diseases — are relieved to finally hear the affirmation of a diagnosis. Sure, they now have it confirmed that they do indeed have this chronic disease, but that disease that they have been mysteriously dealing with for often years – it now has a name. It is real. It can be researched and treated . . . maybe even controlled.
Perhaps you have heard of Multiple Sclerosis . . . Lupus, Chronic Fatigue or Rheumatoid Arthritis. Fibromyalgia? Or how about Hashimoto’s, Sjögren’s or Scleroderma? These names are a mere sampling of what falls into the category of autoimmune diseases — a category that, according to the American Autoimmune Related Diseases Association, afflicts 50 million Americans within the scope of more than 80 known diseases that fit this autoimmune profile. Approximately 75 percent of those afflicted with autoimmune diseases are women, who most often discover the onset during their childbearing years. Though largely discovered in women, these diseases are also seen in men and children, and sometimes even show a higher tendency within a particular ethnic group.
What Is an Autoimmune Disease?
We all have at least a basic understanding of our immune system: It detects the presence of foreign invaders such as viruses and bacteria (the ‘bad guys’), and directs our antibodies (the ‘good guys’) to rid our body of the invader. In a body afflicted with an autoimmune disease, the immune system is essentially confused and directs these attacks towards the patient’s own body (auto = self). This confused immune system can attack anything from patches of skin, to bones, muscles and joints, to the heart, lungs and kidneys – even complete systems, such as the nervous system. Results can be as mild as a rash or as severe as organ failure, disability and even death.
Of course that isn’t to say that people with autoimmune diseases can’t lead normal lives. With advanced treatments and technologies and the more recent surge of total-body and holistic health regimes, many patients can live relatively normal lives and not be forced to sacrifice career, education or extracurricular activities. But even for those, it is often a continual balance of maintaining a strict regime and constantly reminding oneself to not overdo things and to keep track of every little symptom in order to help predict and prevent the onset of a flare-up in disease activity — and sometimes the smallest of factors can be of contribution.
My Personal Connection . . .
A few years ago, I was taking a course in public speaking at a local community college. For our first speech, we had been asked to provide three things that we could bring before the class and use to help introduce ourselves — sort of like training wheels for your first speech. Imagine the curious tension in that room when I proceeded to take my place by the instructor’s desk and whip out a plastic tray holding several plastic medicine bottles. In complete silence, I took the cap off the first one, counted out a few pills, replaced the cap and put it back. I then took the cap off the second bottle and repeated the procedure. This went on for maybe five more bottles, until I had 22+ pills in my hand as I unscrewed the cap on my bottle of water, tossed all of the pills in my mouth and took care of my nightly regime. “It affects more than 2 million Americans; 90% of those are women. Its symptoms can range from a simple rash to total organ failure….” I paused and surveyed the classroom. “It’s called Lupus . . . and I have it.”
Lupus is one of the more well-known autoimmune diseases. That doesn’t mean to say that the majority of the public has any knowledge of the disease, but it usually falls under that category of “ . . . I think I’ve heard of that.” I was diagnosed with Lupus at the age of 17, after a few years of progressively feeling worse and worse and having no understanding of what was wrong with me. My blessing-in-disguise came when I had a rather typical Lupus rash on my cheeks that had oozed, crusted over and could not be concealed with makeup. My fellow students either made comments or looked away because they didn’t know what to think. A few dared to ask but that usually came out along the lines of, “What happened to your FACE????” My regular physician wasn’t sure what to make of the rash, but sympathizing that I was a senior in high school, not feeling well and struggling to graduate — and just in absolute despair that I was a month away from prom with this ‘THING’ on my face . . . (Ohhhhhh, high school!) — I was sent from one doctor to another and one was finally tipped off, did the correct tests, prescribed the right medication and I was ready to go. Rash . . . Gone. Prom . . . ON. I was a happy graduating girl.
Since then, my health has been mostly up and down, and for the first several years, rarely under control for very long. Since then I’ve been on and off of a host of medications, from steroids to chemotherapy . . . had hundreds of X-rays, dozens of MRIs and CT scans, ultrasounds and other tests and procedures . . . several surgeries, including having both of my hips replaced (in my early 20s) and my gallbladder removed. The hips were replaced because of side effects from the steroids and more recently, I was diagnosed with osteoporosis due to the same.
The osteoporosis was a turning point for me. After breaking three bones in the spring of 2006 and hearing from a doctor that I had “bones of a 60-year-old-woman” at age 30, I was instantly fed up. It was pretty much assumed that the steroids were to blame. After years of my doctors not being able to get me off of them in their own ways, I decided to go cold turkey (something any medical professional will tell you not to do — that it can be a serious risk). I was aware of the potential risks involved and willing to take the chance of starting to flare back up and having to return to the meds. I was able to ‘get over the hump’ of symptoms trying to rear their heads and within a few months was feeling better. I’ve been medication-free since that time. I’ve also been physically active, studying dance — and that has seemed to play a major role in getting my body back on track. I feel better when I dance. My body aches when I don’t. My many metal parts are bothersome when I don’t! I even broke yet another bone last year, but I still return to dance – if I stop for too long, I flare up. It keeps me healthy. It keeps me happy. It keeps me sane.
How Do We Get Autoimmune Diseases?
Autoimmune diseases aren’t something we just catch, like a cold or the flu. They are not transferable from one person to the next through any form of physical contact. Most current theories seem to point to the idea that we are either genetically predisposed or not (meaning some of us may carry a gene that could lead to an autoimmune disease), but that gene may or may not ever be triggered into action.
Those who do develop an autoimmune disease may not be able to find any particular trigger. Some can look back after diagnosis, having developed a greater understanding of their disease, and pinpoint a particular incident in their lives where things were just never the same. If a trigger is potentially identified, it is often some type of trauma – something that could be as trivial as a sunburn, broken bone, medication, or perhaps a major surgery or childbirth – or traumatic events such as a car accident.
I had a couple of events that appear to be significant in the early development of my disease. At the age of 12, I spent a day at the beach with a friend and her family. I had always been a child who would achieve a nice sun glow over the course of the summer, even with plenty of sunscreen. Burning was uncommon. On that particular day, I returned home with blisters all over my arms – and have been sun-sensitive ever since.
At the age of 15, I broke my foot and woke up the next morning with symptoms of pneumonia, which seemingly came out of nowhere. Looking back, it has been theorized that the trauma of the broken foot triggered my body’s hyperactive immune response, bringing forth the pneumonia. I was completely “down for the count” for two whole weeks, before I could even begin to slowly merge back into everyday life. It seems rather plausible that the time in the sun that day may have had something to do with a trigger – it’s the first point in my life that I can say “I was never the same again.” The broken foot may very well have been my first big flare-up in disease activity. After that point, I truly didn’t feel the same again, until the blessing-in-disguise of a rash appeared and the diagnosis finally followed.
What Are Some Autoimmune Diseases and Their Symptoms?
As previously mentioned, there are over 80 recognized autoimmune diseases. Symptoms may vary from one patient to the next and not all symptoms are always seen together.
How Do Patients Get Diagnosed?
Diagnosis can be very difficult. Autoimmune diseases are often both poorly understood due to a lack of information, research and funding – and highly misunderstood, from what is many times outdated information or simply heresy. More than a few of these diseases are still relatively “new” by many counts, and the most current information is often rapidly changing.
Further complicating the problem of both diagnosis and treatment is the fact that many of those afflicted with autoimmune diseases have been diagnosed with more than one, and perhaps even several. It is not unusual for Fibromyalgia and Chronic Fatigue to be seen in the same individual, or Lupus, Fibromyalgia, Raynaud’s and Sjögren’s to be in the next. Sometimes this is related to the series of misdiagnoses a patient may go through in obtaining a definitive diagnosis.
In obtaining such a diagnosis, most patients will recall having been sent around from doctor to doctor with a variety of medical theories, sometimes with the offering of a “Let’s see if this helps” type of treatment until the true cause is more certain. Sometimes the cause is even more easily identified by implementing treatments and noting the body’s subsequent response. Doctors are inundated with a multitude of information and when dealing with something like autoimmune diseases with their overlapping symptoms, seemingly infinite and variable testing processes and what can sometimes be a large variety of potential outcomes – it may be understandable why the diagnostic process will span a great length of time. According to the AARDA, “most autoimmune diseases are diagnosed by a combination of blood work, clinical findings and a careful history, not only of symptoms, but also of a detailed family medical history.” Besides recalling that Grandpa had a heart attack or that Aunt Bea is a cancer survivor, how many of us truly know the details of our family’s medical history?
Family history is often of significant importance in the diagnosis of autoimmune diseases. There are cases where these diseases appear to run rampant in families, and then in other families their showing seems to be rather spotty. In the latter, patients may not realize that something as seemingly ‘small’ as their grandmother’s thyroid troubles may have a key connection that could be useful in their quest for a personal diagnosis. The AARDA is currently promoting a campaign that specifically relates to knowing one’s family medical history. The “Autoimmune Quotient” (AQ) campaign details the importance of documentation and familiarizing yourself with your family medical history, in the event that a medical issue warrants that knowledge. Whether of an autoimmune concern or not, family medical history could very well be that last piece of the puzzle that can help lead to a definitive diagnosis.
What Should I Do if I Suspect I Might Have an Autoimmune Disease?
Start by making an appointment with your primary care physician, as you may have to wait days or even weeks to get into the office. In the meantime, start a journal and detail everything. This may seem trivial now and you will likely end up with pages full of repetitive information, but there could be any number of patterns of activity and the tiniest of details that could be a clue for your physician as to what is really going on. Take note of every symptom: How long it lasted, how it felt (including severity), where you felt it, what you were doing when it came on and when it went away, as well as anything you did to try and relieve it and what did or did not work. Also take note of any changes in your life and/or lifestyle. Any major stresses at around the same time as the symptoms came on, or in the months before? Keep in mind that major stresses may not only be things such as marriage, divorce, death, birth, work and finances, but even positive events such as children going away to college or bringing a new pet into the home can still be major source of stress. Note your activities and activity level. Have you started or stopped any exercise regimes – whether regular trips to the gym, monthly hikes or a weekly dance class? Have you started a new job or had changes in your job? Are you sitting down all day, on your feet all day, or had change to that routine? How is your sleep schedule? What is your diet like?
Before you even get to the doctor’s office, don’t forget to write down the basics. Even if they are in your file, most doctors will ask you again anyway – and if you are seeing a new doctor, you’ll likely fill out this information at the initial visit, so have it ready to go beforehand so nothing is forgotten. Include diagnoses of any type, that you have; medications you are currently on, including recent antibiotics; any allergies, including their reactions and the timing of all of the above.
Don’t forget the family details! Try to find out as much as you can about your family’s history . . . siblings, parents, aunts, uncles, cousins and grandparents . . . details are great in the beginning, but the basics are likely all that your doctor needs right now (you can always give them more later if they need it). Any conditions that relatives have or had – how long ago, how they started, progressed, etc. Note things that seem rather ‘normal’, even. A lot of times we think of our grandmother’s arthritis to be part of the normal course, or our aunt’s thyroid problem to just be “the way it goes.” No. Write it down. You could be very glad you did.
You typically have to start with your primary physician. They may run some basic blood-work for anything that seems relevant; they may refer you to a specialist if something seems to warrant further attention, or they may ask you to try a treatment – whether medication, lifestyle change or supplements, to rule out other possibilities. Do remember that with autoimmune diseases, there are so many overlapping symptoms that a lot of possibilities need to be considered, analyzed, crossed off the list, etc., before even really getting down to the nitty-gritty of a potential diagnosis. The best thing you can do to help your doctor is to have your questions ready and keep on top of the journal that I previously mentioned. If your symptoms seem to get worse or they begin greatly interfering with your ability to be productive – whether in work, school or at home – don’t be afraid to stay on top of your doctor or seek immediate medical attention if you feel it is warranted. Sometimes it’s difficult to get more answers – and they may not have any until test results are received and/or new tests can be done. It doesn’t hurt to send out a reminder for someone to check on those lab results. Again, if you are feeling significantly worse, see if you can get an immediate appointment, or if not, seek medical attention if you feel it is warranted. It is better to be safe than sorry.
What Is the Outlook for Autoimmune Diseases?
Prognosis is largely individual, as autoimmune diseases vary in their scope and degree of severity. In some reports, the outlook is significantly better than in the past, but according to Virginia T. Ladd, President/Executive Director of the AARDA, “. . . that could very well be due to the fact that more cases of a mild nature are being diagnosed,” thus underscoring the previous impact of those cases that are more severe. True — more and more patients are able to at least attempt to control their disease for periods of time with a variety of treatments and therapies, but as Ms. Ladd affirms, “There hasn’t been a new treatment for an autoimmune disease in over 40 years.” This leaves patients with a list of old standby treatments and a sporadic selection of clinical trials, many of which require specific criteria for eligibility.
There are, of course, projects that look to be promising, but funding for research is a continual issue. Research is always growing in expense, and oftentimes, the budgets are not increased in the process. With many of these diseases being relative unknowns to the public, and those that are known are often spoken in the manner of, “Oh . . . I think I’ve heard of that . . . What is it?” the need for public awareness and continual education is never-ending. Only by informing others, whether one person at a time or through large organizations and events, will these diseases even begin to grow in the minds of the public, hopefully making a personal connection to the stories of others and with that, a growing desire to continue spreading the knowledge. Some of the greatest of achievements have come to fruition through largely “grassroots” efforts – from one individual to the next, one person at a time. C.K.
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