Living with Lupus

This disease is very personal to me, and back in 1995 when the antibody was detected in my blood and I was diagnosed with it, I didn’t know a thing about it. The internet was very new and there wasn’t that much research that had been done because it was so difficult to diagnose, lucky me I was diagnosed by accident. Today, there is more information, technology is more advanced and of course thank God for the internet! I hope this article will shed some light on this mysterious disease and bring some awareness to what can sometimes be a debilitating illness. If anyone reading this has this illness or thinks they might, consult a does NOT stop here!

What is Lupus? Let’s begin with knowing what this disease is and what it isn’t. Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). In lupus, something goes wrong with your immune system. Normally our immune system produces proteins called antibodies that protect the body. Autoimmune means your immune system cannot tell the difference between foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates auto – antibodies that attack and destroy healthy tissue. These auto antibodies cause inflammation, pain, and damage in various parts of the body.

Lupus is also a disease of flare – ups (symptoms are “all the way live”) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.

Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone. Lupus is not like or related to cancer.  Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.

Research estimates that at least 1.5 million Americans have lupus. The actual number may be higher.

It is believed, that 5 million people throughout the world have a form of lupus. Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too. Women of color are 2-3 times more likely to develop lupus, although people of all races and ethnic groups can develop lupus. More than 16,000 new cases of lupus are reported annually across the country.

Forms of Lupus

  • Systemic Lupus Erythematosus  – Systemic lupus is the most common form of lupus, and is what most people mean when they refer to “lupus.” Systemic lupus can be mild or severe.
  • Cutaneous Lupus Erythematosus
  • Drug-induced Lupus Erythematosus
  • Neonatal Lupus

Some of the more serious complications involving major organ systems are:

  • inflammation of the kidneys (lupus nephritis), which can affect the body’s ability to filter waste from the blood and can be so damaging that dialysis or kidney transplant may be needed
  • an increase in blood pressure in the lungs (pulmonary hypertension)
  • inflammation of the nervous system and brain, which can cause memory problems, confusion, headaches, and strokes
  • inflammation in the brain’s blood vessels, which can cause high fevers, seizures, behavioral changes
  • hardening of the arteries (coronary artery disease), which is a buildup of deposits on coronary artery walls that can lead to a heart attack

Cutaneous Lupus Erythematosus: This form of lupus is limited to the skin. Although there are many types of rashes and lesions (sores) caused by cutaneous lupus, the most common rash is raised, scaly and red, but not itchy. It is commonly known as a discoid rash, because the areas of rash are shaped like disks, or circles. Another common example of cutaneous lupus is a rash over the cheeks and across the bridge of the nose, known as the butterfly rash. Other rashes or sores may appear on the face, neck, or scalp (areas of the skin that are exposed to sunlight or fluorescent light), or in the mouth, nose, or vagina. Hair loss and changes in the pigment, or color, of the skin are also symptoms of cutaneous lupus.

Approximately 10% of people who have cutaneous lupus will develop systemic lupus. However, it is likely that these people already had systemic lupus, with the skin rash as their main symptom.

Drug-induced Lupus Erythematosus: Drug-induced lupus is a lupus-like disease caused by certain prescription drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus, but only rarely will any major organs be affected. Drug-induced lupus is more common in men because they are given these drugs more often; however, not everyone who takes these drugs will develop drug-induced lupus. The lupus-like symptoms usually disappear within six months after these medications are stopped.

Neonatal Lupus: Neonatal lupus is a rare condition that affects infants of women who have lupus and is caused by antibodies from the mother acting upon the infant in the womb. At birth, the infant may have a skin rash, liver problems, or low blood cell counts, but these symptoms disappear completely after several months with no lasting effects. Some infants with neonatal lupus can also have a serious heart defect. With proper testing, physicians can now identify most at-risk mothers, and the infant can be treated at or before birth. Most infants of mothers with lupus are entirely healthy.

Diagnosing Lupus

How Is Lupus Diagnosed? Unlike other chronic illnesses, trying to diagnose lupus isn’t always easy. However, doctors today have more precise techniques and tests to detect signs of disease. Diagnosing lupus is based off of a combo  of physical symptoms and lab results and for most is not a one – time diagnosis. M  ore often than not it is a diagnosis that evolves over time either towards more certainty that a person does or does not meet the criteria for a diagnosis of lupus.

So what is your doctor looking for to help determine if you may have lupus?

Common Symptoms of Lupus

  • Painful or swollen joints and muscle pain
  • Unexplained fever
  • Red rashes, most commonly on the face
  • Chest pain upon deep breathing
  • Unusual loss of hair
  • Pale or purple fingers or toes from cold or stress (Raynaud’s phenomenon)
  • Sensitivity to the sun
  • Swelling (edema) in legs or around eyes
  • Mouth ulcers
  • Swollen glands
  • Extreme fatigue

How Lupus Affects the Body

The Cardiopulmonary System: For those with lupus it is very important to know the differences between cardiopulmonary complications and non-lupus related problems.

The Gastrointestinal System: People with lupus may be affected by problems in any area of the GI system, including the surrounding organs such as the stomach, liver, pancreas, bile ducts, and the gallbladder.

The Musculoskeletal System: More than 90% of people with SLE will experience joint and/or muscle pain at some time during the course of their illness.

The Nervous System: Although nervous system involvement in systemic lupus erythematosus (SLE) is unclear and controversial, people with lupus do often experience signs associated with the body’s nervous system.

The Renal (Kidney) System: It is estimated that as many as 40% of all people with lupus, and as many as two-thirds of all children with lupus, will develop kidney complications that require medical evaluation and treatment.

The Skin: Approximately two-thirds of people with lupus will develop some type of skin disease or cutaneous lupus.

Oral Disease in Lupus: Approximately 95% of lupus patients suffer from some form of oral involvement. Disregarding the importance of proper dental care can be a painful and costly error that in some cases may actually be dangerous.

Antiphospholipid Antibodies: Antiphospholipid Antibodies (APLS) were first discovered in people who had lupus, it was later learned there are many people who produce these antibodies who do not have systemic lupus.

Blood Disorders: Blood is made up of many different parts, but those that are most often affected by lupus are the red blood cells, the white blood cells and the platelets. Those with lupus may experience anemia (low red cell count), Thromobocytopenia (low platelet count), Leukopenia and Neutropenia (low white cell count) and blood clots.

Sjogren’s syndrome and Lupus: It is not uncommon for those with lupus to also have another chronic autoimmune disorder called Sjogren’s Syndrome. Sjogren’s syndrome causes the glands that produce tears and saliva do not function correctly.

Vasculitis: Vasculitis is an inflammation of the blood vessels caused by lupus.

Osteoporosis: It is estimated that as many as 25% of pre-menopausal women with lupus may have osteopenia, or low bone mineral density (BMD), an early sign of osteoporosis. The use of corticosteroid medication often prescribed to treat SLE can trigger significant bone loss. In addition, pain and fatigue caused by the disease can result in inactivity, further increasing osteoporosis risk.

The Eyes: Eye disease occurs in approximately 20 percent of patients with SLE. In some cases, eye problems are related to the inflammatory process of lupus itself. In other cases problems may be due to drug treatment (corticosteroids or antimalarials) or may be a separate problem (glaucoma or retinal detachment).

Living with Lupus

If you have been diagnosed with lupus, you will want to know as much as you can about this complex disease.

Exercise, Fatigue and Photosensitivity: Exercise is to be encouraged in people with lupus. Learn strategies that can help you better understand and cope with: fatigue; rest; and sensitivity to light.

Infections and Immunizations: An individual with lupus is more susceptible to infection than most people. This can be due to the lupus itself affecting your immune system, and the medications used to treat your lupus.

Flu and Pneumonia Vaccines: When a person has lupus, an ounce of prevention is worth a pound of cure.

Pain: Pain and inflammation are common in people with systemic lupus erythematosus (SLE).

Depression: There is no one cause of clinical depression in lupus; rather, there are various and different factors contributing to depression in chronic illnesses such as lupus.

Memory Loss and “Lupus Fog”
At some point during the course of their lupus, up to 50 percent of lupus patients describe feelings of confusion, fatigue, memory impairment, and difficulty expressing their thoughts. This collection of symptoms is called cognitive dysfunction or “Lupus Fog,” and is found in people with mild to moderately active SLE.

Diet and Nutrition
No one questions the necessity of a well-balanced diet. Fad diets — advocating an excess or an exclusion of certain types of foods — are much more likely to hurt rather than help in any disease, including lupus.

The use of antihistamines, decongestants, and steroids for seasonal allergies generally poses no problems when you have lupus. However, allergy shots may trigger a lupus flare. It is best to discuss allergy treatment with both your lupus doctor and your allergist.

As bad as tobacco products are for everyone, their use is even more dangerous when you have lupus. Cigarette smoking has been linked to the development of many autoimmune diseases, including lupus. Smoking can impair your body’s entire circulatory system. Flares of cutaneous (skin) lupus have been linked to an ingredient in tobacco. Therefore, one of the most important things you can do for your health is to stop smoking, and to avoid second-hand smoke.

How May Lupus Affect My Life?
Having lupus can make the demands of everyday life challenging. When lupus is active, symptoms of joint stiffness, pain, extreme fatigue, confusion, or depression can make even simple tasks difficult, and sometimes impossible. And, because you may not have any visible signs of disease, the people around you may not realize how much discomfort and pain you are experiencing, or they may not know that you are sick at all.

You should not ignore the limitations that come with this disease. But there are steps you can take to stay active with work, relationships, and events that enrich your life. These actions and strategies can lighten the burden of your illness and allow you to lead a life of accomplishment and achievement.

Taking Personal Time
Of the many lessons every person with lupus learns, none is more valuable than learning to take personal time. Walking in the park, listening to a baseball game on the radio, planting a flower garden, crocheting a scarf, re-visiting a favorite book or movie, practicing yoga or praying — self-enrichment activities like these will nourish and invigorate your spirit. Taking personal time will help provide you with the strength and the relaxation you need to have a better life while living with lupus.


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