Education

UPCOMING WEBINARS

Deciphering the Genetic Complexity of Lupus: Insights and Future Avenues 

Wednesday, June 26th, 2024 at 7 PM EST

With Dr. Linda Hiraki, as she explains the intricacies of the genetic complexity of Lupus in systemic lupus erythematosus patients, the disease progression & associated outcomes.

Dr. Linda Hiraki is spearheading a large-scale, international cohort study of systemic lupus erythematosus patients, following them prospectively over years to understand the genetics of lupus, its diverse manifestations, disease progression, and associated outcomes. Additionally, she is at the forefront of research efforts to uncover rare genetic alterations linked to systemic inflammatory diseases, including studies focused on monogenic lupus and lupus-like disease. Join us as we explore the intricacies of this genetic complexity and understand what it entails for Dr. Hiraki and the patients participating in these ground-breaking studies.

 

About Dr. Hiraki: Dr. Linda Hiraki is a Clinician-Scientist in the Division of Rheumatology and Scientist in Genetics & Genome Biology Program at SickKids Research Institute. Hiraki completed her medical degree at Queen’s University, and her clinical training in paediatrics and rheumatology at SickKids. She is certified by the Royal College of Physicians and Surgeons of Canada in the specialties of paediatrics and paediatric rheumatology. Hiraki went on to pursue research training at the Harvard T. H. Chan School of Public Health where she completed a Masters and Doctor of Science in Epidemiology. Hiraki holds a Canada Research Chair in Genetics of Rare Systemic Inflammatory Diseases.

PAST WEBINARS

Navigating Service Canada's Benefits: Discover Your Options 

Tuesday, April 23rd, 2024 at 7 PM EST

Specialist, Vanessa Gaspar, as she outlines the array of benefits provided by Service Canada.

This is the eService form. A client can fill it out and someone from Service Canada will call them within 2 business days. If the person on the phone is unable to complete the request, they would be able to book the client at the nearest Service Canada Center. Filling out this form is also great for someone wanting to create a My Service Canada Account (MSCA). We can provide the Personal Access Code (PAC) over the phone.The handout- GC Key Sign in manual with step-by-step instructions will help you in how to create an account. They can apply for CDDP online.

This link has everything someone needs to know about Canada Pension Plan Disability (CPPD). If someone clicks the “Apply” button, they will be able to download and print the application forms. If someone clicks “How much you could receive”, they will be able to check the maximum amounts and average monthly amounts.

This is the link for the children’s benefits. Paper application or MSCA application is accepted. If they between 18-25, they need to be in full-time schooling and submit proof.

This link is important information about Employment Insurance (EI) sickness benefits. Sickness Benefits provides financial assistance to individuals who are unable to work due to illness, injury, or quarantine. (maximum of 26 weeks).

This link is for Compassionate Benefits, Family Caregiver Benefits for Adults, and Children.

  • Compassionate Care Benefits provides financial assistance when someone has to provide care/support to a gravely ill family member who is at risk of dying. (maximum 26 weeks)
    • The doctor needs to fill out a specific medical certificate (INS5216B) which can be found by clicking this link: Form Detail (servicecanada.gc.ca)
    • Either the patient or legal representative needs to fill out an authorization to release a medical certificate for EI (INS5216A): Form Detail (servicecanada.gc.ca). The doctor will answer a question on the medical certificate if the patient is able to sign off on it, if they are unable to that is when the legal representative will sign off. Make sure to read what the doctor indicated on the medical certificate.
  • Family Caregiver Benefits for Children provides financial assistance when someone has to provide care and support for a critically ill or injured child. (Maximum of 35 weeks)
  • Family Caregiver Benefits for Adults provides financial assistance when someone is providing care and support to a critically ill or injured adult. (maximum 15 weeks)
    • The doctor needs to fill out a specific medical certificate (INS5242B) which can be found by clicking this link: Form Detail (servicecanada.gc.ca)
    • Either the patient or legal representative needs to fill out an authorization to release a medical certificate for EI (INS5242A)Form Detail (servicecanada.gc.ca). The doctor will answer a question on the medical certificate if the patient is able to sign off on it, if they are unable to that is when the legal representative will sign off. Make sure to read what the doctor indicated on the medical certificate.

If an EI client is unable to manage their own affairs, the client can fill out an Appointment of Representative form (INS3280): Form Detail (servicecanada.gc.ca) or obtain a court order from the provincial government.

This link is important information in regards to the new Canadian Dental Care Plan

This webinar was not recorded. The above are the resources for additonal help

Lupus Ontario AGM

Saturday, March 9th, 2024 at 10:00 AM EST. 

 

Learn about Type 1 or Type 2 Lupus with Dr, Murray Urowitz, who presented this lecture at this year’s AGM. 

Pregnancy in lupus and fertility management

Wednesday, February 7th, 2024 at 7:30 PM EST. 

This session will delve into the intricate challenges faced by women with lupus during pregnancy and the effective management of fertility issues. Medication considerations will also be addressed in this comprehensive discussion.

About Dr. Carl Laskin: Dr. Carl Laskin, a prominent figure at the University of Toronto since 1983, brings over 30 years of expertise to our webinar. Currently serving as the Managing Director of TRIO Fertility in Toronto, Dr. Laskin is a distinguished specialist in rheumatology, obstetrics & gynecology, and reproductive endocrinology. Dr. Laskin has been actively involved in groundbreaking clinical research, particularly in areas such as recurrent miscarriage and reproductive medicine in individuals with rheumatic diseases. As a past president of the Canadian Fertility & Andrology Society, Dr. Laskin holds a unique position at the intersection of rheumatology and fertility.

 

 

Unlocking the Power of Biologics: A Webinar with Dr. Tselios

Wednesday, November 22nd 2023  at 7PM EST. 

“Unlocking the Power of Biologics: A Webinar with Dr. Tselios” was an informative online event where Dr. Tselios, an expert in the field of biologics, shared insights into the potential of biopharmaceuticals. During the webinar, Dr. Tselios discussed the revolutionary impact of biologics in healthcare, highlighting their applications in treating various diseases.

Watch on YouTube 

CARE for All – Symposium 2023 Playlist

Wednesday, November 22nd 2023  at 7PM EST. 

The Lupus Ontario Virtual Symposium was on October 21st beginning at 10 a.m., with presentations by medical professionals covering new research and innovative ideas. This year’s theme was “CARE 4 All” with topics covering Community, Access, Resources and Education.

Did you miss the CARE for All Symposium or want to rewatch your favourite session? The recordings are now available.
 

 Transition of Care – from Paediatric to Adult

Wednesday July 20th at 7 p.m. EST

We are honoured to have Dr. Stephanie Wong, our esteemed Lupus Ontario Geoff Carr Fellow from SickKids Hospital. Dr. Wong will share her expertise on the transition of care and medication for children and youth as they move from paediatric care to adult care. The webinar will also include a discussion with a young adult who has recently transitioned to adult care.

 

Why Early Access is Important To Prevent Organ Damage 

The informative and engaging webinar with Dr. Zahi Touma discussing the critical importance of early access to medical care to prevent organ damage in patients with chronic diseases took place on May 18th, 2022, from 7:00-8:00 PM. Dr. Touma, a renowned Rheumatologist and Clinician-Scientist with extensive expertise in the management of autoimmune diseases, such as lupus and vasculitis, shared valuable insights during the event. The webinar provided an overview of the different types of organ damage that can occur in patients with chronic diseases and explained how early detection and timely intervention can significantly improve patient outcomes. Dr. Touma also addressed the challenges faced by patients and healthcare providers in accessing care and provided practical tips on overcoming these barriers.

This recorded webinar is now available for viewing. It is a must-watch for healthcare providers, patients, and caregivers who want to gain knowledge about the importance of early access to medical care and stay updated with the latest advances in the management of chronic diseases. Don’t miss the opportunity to hear from one of the leading experts in the field and have your questions answered in real-time.

 

Symposium Playlist 

 October 22nd 10 AM – 2:30 PM EST 

 
Find the recording from all the sessions here! 
 
Thank you to all the attendees and special thanks to our panelists,
 
Dr. Zahi Touma
Dr. Leslie Laign
Dr. Tala El Tal
Dr. Amanda Steiman
Dr. Konstantinos Tselios

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

COVID-19 Vaccine Third Dose Recommendations – 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

Red Blood Cell Alterations Contribute to Lupus

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

What the gut got to do with it PDF

Arthritis Society PDF

Raynaud’s Association of America PDF

Sjogrens Society of Canada PDF

Fibromyalgia London Group PDF

Fighting Fatigue: Using Energy Management Strategies

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

Managing Your Life with Lupus 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

The Story Behind Cognitive Impairment and Lupus Brain Fog Presentation

Recordings

 

https://youtu.be/hSSWI9KmmE8
Webinar: New Hopes/ New Drugs 
https://youtu.be/OO8FdeWU-9s
What’s the gut got to do with it?

https://youtu.be/4emfPrz97qg

https://www.youtube.com/watch?v=5U75RpedVN8

https://www.youtube.com/watch?v=NbBsBv-6A5Q
Considerations for COVID-19 and Lupus (SLE) – Lupus Foundation of America

https://www.youtube.com/watch?v=qMOGjqI30TE&t=1s
Webinar: Gut Health: It’s Not the Food’s Fault

https://www.youtube.com/watch?v=Ee-00c6Gi9Q
Webinar: Makeup, Skin Care & Getting Ready for Summer

https://www.youtube.com/watch?v=BU06jytaI4g
Webinar: Managing Your Life with Lupus

https://www.youtube.com/watch?v=pqpvSbHRsgI
Webinar: Medical Cannabis – Separating Facts From Fiction

https://www.youtube.com/watch?v=yFY5nlCkq3I
Webinar: Plaquenil (Hydroxychloroquine): Eye Safety, Testing and Dosage

https://www.youtube.com/watch?v=-PZgO7C4K9E
Webinar: Practical Strategies for Managing Stress and Anxiety

https://www.youtube.com/watch?v=a4PNZmOaze0
Webinar: SLE and COVID-19: What is the Evidence?

https://www.youtube.com/watch?v=5QCaukj3rxk
Webinar: SLE and COVID-19: What is the Evidence? Follow-Up Q and A

https://www.youtube.com/watch?v=y5dpmVlc6pY
Webinar: Skin Infections & Rashes

https://www.youtube.com/watch?v=7Ti9mCjjb1s
Webinar: Taking Care of Our Mental Health During Social Distancing

https://www.youtube.com/watch?v=5U75RpedVN8
Webinar: The Story Behind Cognitive Impairment and Lupus Brain Fog

https://www.youtube.com/watch?v=ENv-rc7zH1o
Webinar: Your Treatment and Support Teams

Webinar Q&A with Dr. Touma and Dr. Barraclough

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.

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

May is Lupus Awareness Month. Stay informed about all events and updates .

Sign the petition and MAKE A DIFFERENCE!

This Lupus Ontario petition is advocating to have the Ontario government approve all biologics approved by the Federal Health Agency (CADTH) added to the Ontario Drug Formulary under the Limited Use code rather that the Exceptional Access Program. The Limited Use code eliminates the administrative burden for rheumatologists and provides faster access for lupus patients. Please print and gather signatures and send it to our address: 285 Taunton Road East, Suite 4438, Oshawa, ON  L1G 3V2 Canada