Life With Lupus
Imagine if, before going to sleep, you had to calculate how many breaths are required to last through the night. What if you had to pull your eyelashes to blink or compress your chest for a heartbeat?
Unpredictable Autoimmune Disease
How thankful we are for our autonomic nervous system (ANS). It keeps us living without conscious effort. Essential bodily functions like breathing, heartbeat, disease defense, skin healing and food digestion occur automatically.
The autoimmune system works with ANS by helping to protect against harmful substances like bacteria, viruses, toxins, cancer cells, and foreign blood and tissue. For the estimated 1.5 million Americans with autoimmune disorders like lupus, any human tissue can suffer mistaken identity. Then the battle begins with one’s own relentless immune system that does not distinguish between healthy tissue and antigens.
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Since all organs are fair game, symptoms vary among lupus patients. Premature death results when the target is a vital organ—with heart failure as a common cause. Though patients can live longer, the mean range is in the 40s to 50s.
The Lone Wolf
There are some indications that cause medical professionals to suspect lupus. The word lupus (from the Latin word for wolf) is attributed to the thirteenth century physician Rogerius, who used it to describe erosive facial lesions reminiscent of a wolf’s bite.
Though lupus has the potential to affect anyone, about 9 out of 10 lupus patients are females aged 15–35. It is more common among African-American, Latino, or Asian women. But it is not solely a female disease. Eighty-five percent experience skin changes. Nearly half the documented cutaneous lupus patients manifest the butterfly-mask facial inflammation—a photosensitive malar rash indicative of systemic lupus eythematosus (SLE). Difficult cases are generally thouse outside the statistical norm.
Cutaneous Lupus Manifestations
Diagnosis is based on characteristic appearance of the affected area in conjunction with skin biopsy and/or various laboratory and blood tests.
- Discoid lupus erythematosus is the most common form of LE, and consists of the formation of scaly patches of skin which are red in color, typically on the nose, ears, and/or cheeks.
- Subacute LE consists of a dry rash on the upper torso, often after exposure to the sun, which does not scar and may present as ring-shaped, nodules, vasculitis, or scaly bumps. The condition and result in pigmentation and scarring of the affected area, and may involve hair follicles, resulting in permanent alopecia in some cases.
- Lupus tumidus affects the dermis, and is distinctive because of its extreme photosensitivity. It consists of red, swollen bumps or patches, similar to hives, which may be ring-shaped.
- Lupus profundus affects subcutaneous fat, and may affect anyone, including children, and consists of deep, firm nodules typically on the face, resulting in Lipodystrophy.
- Neonatal LE affects the newborns of mothers with subacute LE, and consists of a temporary rash of similar nature.
- Cutaneous lupus mucinosis is rare and typically occurs as a symptom of lupus tumidus, and consists of small bumps, plaques or nodules on the face, torso or upper arms.
Differential Diagnosis (Other conditions with similar appearance)
Lupus sufferers have a greater chance of getting Hodgkin’s lymphoma as well as non-Hodgkin’s lymphoma.
Other Lupus Symptoms
In the absence of the characteristic facial blemish, diagnosis can be delayed. It is not likely that a doctor will suspect lupus for everyone with fatigue, dry eyes, irregular cardiology, persisent joint pain, cold sensitivity (Raynaud’s Phenomenon) digestive or endocrine disorders, and light sensitivity. A family history of autoimmune disease—not particularly lupus—may alert an astute physician.
For most people, it takes months or even years to get diagnosed.
Gorman’s lupus began more than a dozen years ago with pain that ran from her back to her side. A chest x-ray showed pleural effusion—a buildup of fluid between the layers of lung tissue. Subsequent visits to a pulmonologist and a rheumatologist led to a blood test that showed a high presence of antinuclear antibodies and the diagnosis that she had a “very solid case of lupus.”
Patients may contend with internal negative emotions and external social ostracization resulting from visible rashes. Extreme fatigue, discribed as an overwhelming inability to function, is also a formidable challenge. Yet, many patients like Gorman overcome the adversities .
Diagnosing and Treating Lupus
“It’s a complicated disease, and it’s not easy for people to grasp it,” said Dr. Askanase. “If you’re short of breath, people think you have asthma. If you have a rash, they think you’re allergic to something. But lupus isn’t that simple. We’ve achieved extraordinary things, but we could do better by lupus patients in terms of diagnosis and treatment.” Every case of lupus is different. Askanase points out that joint pain symptoms can be merely annoying or crippling, and the rash can range from rosy cheeks to scaly, inflamed skin. The condition can surface as a one-time episode, come and go with periodic flares, or present chronic symptoms.
Specific blood tests are available to identify markers for the disease. These include antinuclear antibody tests, autoantibody tests, CBC, comprehensive metabolic panel, C‑reactive protein (CRP), erythrocyte sedimentation rate (ESR), and urinalysis.
Specific blood tests are available to identify markers for the disease.
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- Lupus Erythematosus. onlinedermclinic.com
- 26 Photos That Show How Autoimmune Disease Can Affect Your Skin. themighty.com
- What is Lupus? Lupus Patients Understanding & Support. lupus-support.org.uk
- 27 Famous People with Lupus. ranker.com
- Lupus Erythematosus. biomedicalephemera.tumblr.com
- Living With Lupus. everydayhealth.com
- Slideshow: A Visual Guide to Understanding Lupus. webmd.com
- Cutaneous Lupus Erythematosus: Diagnosis and treatment. nih.gov