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


We should be thankful 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.

Since all organs are fair game or under attack, 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 diagnose 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.

Lupus Facial Lesion

Though lupus has the potential to affect anyone, about 9 out of 10 lupus patients are females with an age range from 15 to 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 those 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 SLE condition results 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.

Lupus chest lesions
Ultra-violet (sunlight) exposure can cause chest lesions.

Differential Diagnosis (Other conditions with similar appearance)

  • Antiphospholipid syndrome
  • Fibromyalgia
  • Hepatitis C
  • Infectious mono­nu­cleosis
  • Infective Endocarditis
  • Lyme disease
  • Lymphoma, B-cell
  • Mixed Connective-Tissue Disease
  • Polyarteritis nodosa
  • Preeclampsia (Toxemia of Pregnancy)
  • Rheumatic Fever
  • Rheumatoid arthritis
  • Scleroderma
  • Serum sickness
  • Thrombotic Thrombo­cytopenic Purpura
  • Undifferentiated Connective-Tissue Disease

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, there can be a delay in lupus diagnosis. 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.

Symptoms that may remain undetected for a time include ulcers within the nose and mouth, extreme headaches, fatigue, persistent low-grade fever, dizziness, chest pain, hair loss (alopecia), sleep disorders, and internal organ growth or damage.

“For most people, it takes months or even years to get diagnosed because the symptoms come and go and don’t clearly point to lupus,” according to Sara Gorman, who was diagnosed at 26, in an interview with Dr. Sanjay Gupta.

For most people, it takes months or even years to get diagnosed.

Gorman’s lupus began more than a dozen years ago with the primary symptom of 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 of a “very solid case of lupus.”

Life With Lupus

Patients may contend with internal negative emotions and external social ostracism resulting from visible rashes. Extreme fatigue, described as an overwhelming inability to function, is also a difficult challenge to ascend. Yet, many patients like Gorman overcome the adversities, including entertainers such as Selena Gomez, Lady Gaga, Nick Cannon, Toni Braxton, and Seal.

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 individual 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.

To date, there is no cure for lupus. Doctors treat symptoms individually with appropriate medications. Immuno­suppres­sive drugs slow inherent immune system response. Supplements are used to replace substances lacking in the body, such as thyroid hormone, vitamin B12, or insulin, due to the autoimmune disease.

The goal of cutaneous treatment is to relieve visible symptoms and minimize scarring. Patients with outward manifestations such as the characteristic SLE malar rash, often use cosmetics to conceal appearance. This article provides general information. See a qualified physician for diagnosis and treatment.

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