This is an article Rachel wrote for her MOMS club. Rachel is a friend of mine from church who, like me, has Lupus. Rachel has given me permission to share it for Lupus Awareness Month. Her thoughts are beautifully expressed. Any comments I get, I will pass on the her.
Rachel on Lupus
I am at war with myself.
On a cellular level, in fact, my body cannot distinguish friend from foe, healthy from damaged, self from intruder. And so my immune system attacks anything and just about everything, leaving behind damaged cells and organs which cannot do their work and replacing vital organs with scartissue. I can talk about this fervently, with complete candor, or casually, as if I were teaching a course on Lupus. I have been trying to stop this battle for over ten years now.
In the interest of full disclosure, it’s not entirely true to say that I have Lupus. I have Mixed Connective Tissue Disease with features of SLE (systemic lupus erythematosis) and Polymyositis along with Interstitial Lung Disease and Idiopathic Thrombocytopenia Purpura. I have a medical history form which I put together to include my medications, history, and allergies; it currently takes up 2 ½ pages of single-spaced text. In many ways, I am just waiting for the next shoe to drop – for the next syndrome or diagnosis or expression of the message central to all of this. I’m waiting for the next way in which my body decides to break itself down. One thing is for sure. None of you will ever have the diseases I have in the combination I do. As far as my doctors can tell, I am unique. Every complication is uncharted territory. Every treatment is experimental.
I’m not writing this to tell you how to avoid Lupus (or its host of related illnesses). No one knows why some people get Lupus. It’s not contagious or linked to risk behaviors. There seems to be a genetic predisposition, but there is no established genetic link. Diet, exercise, stress, activity level, income, gender, ethnicity, and location seem to affect the severity, expression, and incidence of Lupus, but any of those links are tenuous at best. Statistics say that 1.5 million Americans already have it. Of those, 90% are women. Of those 90%, 80% are women of childbearing years (15-45). People of color are two-to-three times more likely to be diagnosed with Lupus as are their Caucasian cohorts. Believe me, I wish I could tell you how to avoid getting Lupus.
Lupus is known as ‘The Great Imitator.’ It can mimic dozens of other diseases and the average length of time from onset of symptoms to diagnosis is thought to average four years. The symptoms can be nebulous, but the diagnostic criteria call for seven of the following characteristics: photosensitivity (sensitivity to light), malar rash (butterfly or ‘wolf bite’ rash on both cheeks and across the bridge of the nose), Raynaud’s syndrome (discolored fingers in response to cold or stress), achy or swollen joints, fevers, fatigue, skin rashes, kidney damage, pleuritis, hair loss, sores in the mouth or nose, abnormal laboratory tests, and seizures. The effects of Lupus vary for individuals and can involve any tissue in the body. It can also affect thinking abilities, memory, and personality. It affects the patient’s career, finances (one of my medications is $4000 per dose), personal choices, family size, living arrangements, and appearance. Sometimes Lupus patients who are suffering greatly appear completely healthy.
Twenty years ago, anyone who thought she might be one of the above statistics had very little hope for a good future. Today, most people with Lupus can expect a normal life span and there are many very effective medications to help minimize the impact of the disease on a patient’s daily life. Treatment is tailored to the patient’s disease process, starting with anti-inflammatory drugs, anti-malarials, corticosteroids, immunomodulators, and chemotherapy. Promising advances are being made all of the time.
October is Lupus Awareness Month. So, now that you are aware that someone you know has Lupus, I urge you to talk to your family and friends about it. Visit the Lupus Foundation of America’s website for more information http://www.Lupus.org/. Wear a rubber bracelet if it helps you. Add your two-cents’ worth to the debate over stem cell therapy, if you wish. Just please be aware.
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