Managing Your Life with Lupus Webinar (Aug 17 at 7 p.m.)

Discovering the ways and the willpower to overcome the challenges of living an enriched life while managing lupus can be daunting. Brynn is a mother of five, 3rd year university student, COVID-19 survivor, Ottawa Lupus Support group co-facilitator, and a Board member of Lupus Ontario. Join her as she recounts the tips she has learned, and the lifestyle skills acquired, over the past decade since her SLE diagnosis in 2010. Together, we can redefine our perceptions of what it means to live well with lupus.

This event is free and we ask that you register in advance.

Recording of July 2021’s Webinar

Practical Strategies for Managing Stress and Anxiety Presentation Download

Lupus Education

No one knows for sure what causes lupus. What we do know is that the immune system (the body’s defense against viruses and bacteria) is not able to tell the difference between intruders and the body’s tissues. The immune system attacks parts of the body, which causes inflammation and creates the symptoms of lupus. Lupus is not contagious and is not related to AIDS or cancer. It belongs in the family of diseases that includes rheumatoid arthritis, multiple sclerosis, juvenile diabetes, and scleroderma.

Lupus is a chronic disease caused by inflammation in one or more parts of the body. The majority of people diagnosed with lupus are women in the prime years of their lives – between the ages of 15 and 45 years. Especially impacted are communities that include women of African, Caribbean, Asian, and Aboriginal descent.

In an autoimmune disorder the immune system cannot tell the difference between foreign substances and its cells and tissues. The immune system then makes antibodies directed against itself. These antibodies — called “auto-antibodies” (auto means ‘self’) — cause inflammation, pain, and damage in various parts of the body.

Unfortunately, there is no cure for lupus. Treatment can only hope to make the sufferer comfortable at best. It is for this reason that early detection is so important.

Types of Lupus

The most common type of lupus is SLE (systemic lupus erythematosus). It is a complex and baffling condition that can target any tissue or organ of the body. Common targets include: the skin, muscles, joints, blood and blood vessels, lungs, heart, kidneys, and the brain. For some people, only the skin and joints will be involved. In others, the joints, lungs, kidneys, blood, or other organs and/or tissues may be affected. Generally, no two people with systemic lupus will have identical symptoms.

There are other types of lupus that mainly affect the skin. Discoid lupus or Chronic cutaneous lupus erythematosus (CCLE) is always limited to the skin. It is identified by a rash that may appear on the face, neck, and scalp. Discoid lupus is diagnosed by examining a biopsy of the outbreak. In discoid lupus, the biopsy will show abnormalities that are not found in the skin without the rash.

A few individuals develop drug-induced lupus as a response to some medications used to treat other conditions. These symptoms disappear when the person stops taking the medication.

Neonatal lupus is a rare condition acquired from the passage of maternal autoantibodies, specifically anti-Ro/SSA or anti-La/SSB, which can affect the skin, heart, and blood of the fetus and newborn. It is associated with a rash that appears within the first several weeks of life and may persist for about six months before disappearing. Congenital heart block is much less common than the skin rash. Neonatal lupus is not systemic lupus.

General symptoms

Each person’s experience will be different, and the diagnosis of lupus must be made by a doctor. Some people will have only a few of the many possible symptoms. Because it can target any of the body’s tissues, lupus is often challenging to identify or diagnose. That’s why it is called “the disease with 1000 faces”.
Before symptoms specific to lupus occur, flu-like symptoms may appear, along with severe fatigue, a sudden unexplained loss or gain in weight, headaches, hair loss, hives, high blood pressure, or changes in the color of fingers in the cold.
Any of the following may indicate to a doctor that lupus is present. However, many of these symptoms overlap with Arthritis diseases, so you need to see a rheumatologist for diagnosis. This list is a small sample of the signs that a person with lupus may experience:
Joint pain, sometimes with swelling, redness, and heat
A red rash across upper cheeks and bridge of the nose
Extreme fatigue
An unusual reaction to sunlight
A red scaly rash
Small, usually painless sores inside the nose or mouth
Chest pain, worse when lying down or inhaling
Swelling of feet and legs, weight gain
Seizures or severe psychological symptoms
Abnormalities in blood chemistry which show up in blood tests

Diagnosis

Because many lupus symptoms mimic other illnesses, are sometimes vague and may come and go, lupus can be challenging to diagnose. The physician usually makes the diagnosis after a careful review of a person’s entire medical history coupled, an analysis of the results obtained in routine laboratory tests, and some specialized tests related to immune status. Although there is no single test available, there are many laboratory tests that can aid the physician in making a lupus diagnosis.

Routine clinical tests which suggest that the person has an active systemic disease include: sedimentation rate (ESR) and CRP (C-reactive protein) binding, serum protein electrophoresis which may reveal increased gammaglobulin and decreased albumin, routine blood counts which may show anemia and low platelet and white cell counts, routine chemistry panels which may reveal kidney involvement by increases in serum blood urea nitrogen and creatinine abnormalities of liver function tests, and increased muscle enzymes (such as CPK) if muscle involvement is present. This is not a comprehensive list of tests, and any of these also help diagnose other non-lupus diseases. The task of identifying the condition is very complicated and can take some time to analyze and determine your specific diagnosis.

Treatment

Treatment is based on the specific needs and symptoms of each person. Because the characteristics and course of lupus may vary significantly among people. It is important to emphasize that a thorough medical evaluation and ongoing medical supervision are essential to ensure proper diagnosis and treatment.

Medications are often prescribed for patients, depending on which organ(s) are involved, and the severity of involvement. Effective patient-physician discussions regarding the choice of medication, its possible side effects, and any changes in doses are vital. Common medications include non-steroidal anti-inflammatory drugs (NSAIDs), acetaminophen, corticosteroids, antimalarials, immunomodulating drugs, and anticoagulants.