Education

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

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.

Additional Information About Lupus

Articles

Appropriate Exercise

Are You a Lupus Patient Who Is or An Employer of a Lupus Patient Who is Deaf, Deafened or Hard of Hearing

Canada’s COVID Immunization Plan

Communicating with Your Health Care Professionals

COVID-19 Vaccination Recommendations for Special Populations – Ministry of Health

Eye Health and Eye Care at Home

Government Supports

Government Supports – Caregiving Benefits

Government Supports – Trillium Drug Program

Hidden Costs of Lupus

LED Lighting and Photosensitivity

Liver Abnormalities In SLE

Lupus Books for Children

Lupus Checklist by GlaxoSmithKline

Lupus and Mouth Ulcers

Medical Expenses

Mental Health Commission of Canada’s Mini Guide to Help Employees’ Mental Health Through Winter

More on Exercise

Prepare Your Mind

POA – Power of Attorney for Personal Care

Raynaud’s Relief

Questions to Ask the Doctor

2020-2021 Influenza Vaccine for Lupus Patients

Diet + Nutrition

Intermittent Fasting

Iron Rich Foods

Kitchen Coping

Lupus in the News

Brian Crombie Radio Hour – Epi 392 – Lupus Awareness Month with Rupinder Sandhu

Canada Now – Jeff Sammut with Brynn Clark

Charitable Choices: Lupus Ontario, Awareness and Support For Canadians – Toronto Guardian

The disease with 1,000 faces now has 1,000 masks: Recognizing World Lupus Day during COVID – Bradford Today

Presentations + Handouts

ADP- Assistive Devices Program

Common Rashes and Skin Infections Seen in Systemic Lupus Erythematosus (SLE)

Dealing with Summer UV, Heat and Humidity

Getting Ready for Winter

Gut Health: It’s Not the Food’s Fault Presentation

Lupus and Co-Existing Fibromyalgia

Lupus and the Body Poster

Makeup, Skin Care & Getting Ready for Summer Webinar Presentation

Medical Expenses Template

Nutrition During a Pandemic Webinar Notes

Pharmaceutical and Government Programs to Help Pay for Medications

Plaquenil (Hydroxychloroquine): Eye Safety, Testing and Dosage

Practical Strategies for Managing Stress and Anxiety Presentation

SLE and COVID-19: What is the Evidence?

Taking Care of Our Mental Health During Social Distancing

The Kidney and Lupus

Therapeutic Laser for Symptom Management

Treatment and Support Teams

Treatment and Support Teams Worksheet

Recordings

Webinar: Gut Health: It’s Not the Food’s Fault
Webinar: Makeup, Skin Care & Getting Ready for Summer
Webinar: Medical Cannabis – Separating Facts From Fiction
Webinar: Plaquenil (Hydroxychloroquine): Eye Safety, Testing and Dosage
Webinar: Practical Strategies for Managing Stress and Anxiety
Webinar: SLE and COVID-19: What is the Evidence?
Webinar: SLE and COVID-19: What is the Evidence? Follow-Up Q and A
Webinar: Skin Infections & Rashes
Webinar: Taking Care of Our Mental Health During Social Distancing
Webinar: Your Treatment and Support Teams

Relaxation Techniques

Art Therapy for Stress Management

Autogenic Relaxation

Breathing

Connecting with Nature

Creative Visualization

Garden Therapy

Hypnosis

Mantras and Affirmations

Mindfulness

Youth with Lupus