ADVOCACY 101 / GOVERNMENT RELATIONS ADVOCACY: IT'S A LONG, CONTINUAL PROCESS - DR. BRETT THOMBS & DR. CLAIRE ADAMS & MAUREEN WORRON-SAUVE
What does it mean to be an advocate? Learn about how you can become a successful advocate for yourself or organization and what benefits can come from this. This session will provide specific details on how advocacy has helped advance scleroderma outreach and focus, and what has been achieved over the past few years.
Since 2018, over 1,000 healthcare students have had the benefit of learning about scleroderma directly from patients who shared their journeys through “interprofessional education”. This unique patient-centric approach to education benefits both the students and teachers. Join representatives from the Steffens Scleroderma Foundation as they discuss the benefits of being a patient-educator, along with tips for how to tell your story, and become a critical member of your own care team.
YOGA IS FOR EVERY SCLERODERMA BODY - LORI PIERCE & ALEXIS REINARZ
Are you someone who has previously shared that you "can't do yoga"? This presentation will dispel the myths around yoga and will share why yoga is accessible to everyone. Learn about the benefits of yoga specifically for scleroderma patients and learn helpful poses and techniques that you can practice anywhere.
OPENING KEYNOTE THE FIVE STAGES OF GRIEF: DISCOVERING AND ACCEPTING A LIFE WITH SCLERODERMA - AMY GIETZEN
Having lived over 20 years of her life with Systemic Scleroderma, Amy has endured, struggled and overcome personal growth, physical inabilities, and spiritual wellbeing. Her keynote presentation will reflect on the five stages of grief: denial, anger, bargaining, depression, and acceptance. Join her as she shares her experience from diagnosis to master advocate, and all the stops in between.
PATIENT TO PATIENT PANEL - MODERATED BY MAUREEN SAUVE
This session is designed for scleroderma patients to engage with one another through an organized discussion, moderated by Maureen-Worron Sauvé. You will have the opportunity to hear from four scleroderma warriors and and ask them questions related to their journey, or yours.
THE PSYCHOLOGICAL APPROACH TO PAIN MANAGEMENT - DR. GINNY MARIL
Learn strategies to help manage the physical and emotional pain associated with living with a chronic illness. Dr. Maril will share evidence-based strategies and tips that participants can use to combat a variety of symptoms associated with scleroderma.
The Scleroderma Patient-centered Intervention Network (SPIN) is a Canadian-led international organization of researchers, health care professionals, and people with scleroderma who work together to better understand challenges faced by people with scleroderma and develop, test, and disseminate programs to address those challenges. This session will provide an update on SPIN’s research and patient programs, discuss a new initiative to increase patient engagement in SPIN, and describe opportunities for getting involved in SPIN as a patient advisor and other roles.
BASIC RESEARCH IN SCLERODERMA: WHERE WILL IT TAKE US? - DR. MARK LARCHÉ
Scleroderma is complicated disease from a clinical point of view. Like many complex diseases, what looks somewhat similar on the outside, maybe quite different on the inside. Understanding the differences can give us insight into the environmental, genetic, molecular, and cellular basis for different forms of scleroderma, allowing us to move towards a better understanding of how the disease process works, and therefore, how to treat it more effectively. Using examples from recent advances in basic research, I will illustrate how science can explain the causes of disease, provide new diagnostic screening tools, new treatments, and new ways to monitor how the treatments are working.
STEM CELL TRANSPLANTATION: A WHIRLWIND OVERVIEW - DR. NANCY MALTEZ
Systemic sclerosis is a complex multi-organ disease with limited treatment options. Autologous stem cell transplantation may be an option for a select subset of those suffering with this disease. During this presentation, we will review an update of eligibility criteria for this therapy, potential benefits and the logistics of the procedure itself.
SCLERODERMA FROM THE NECK UP - DR. MARTIN HOGAN
Discover some of the common oral manifestations that scleroderma can present and earn about some of the ways your oral health care team can help you manage some of these oral conditions secondary to scleroderma. This session will explore some resources that both the dentist and patient can utilize to help patient's have better function and to live a more comfortable and healthy lifestyle.
RAYNAUD'S PHENOMENON - DR. MARY-CLAIR YELOVICH
This talk will focus on explaining what causes Raynaud's Phenomenon, why many patients with scleroderma experience it, and the current treatments (both medication and non-medication options).
MENTAL HEALTH IN SCLERODERMA: COVID-19 & BEYOND - DR. BRETT THOMBS
Discover some of the most up-to-date research in mental health including mental health among people with scleroderma across the COVID-19 pandemic. This session will discuss the difference between mental health and mental illness, and provide tips and tools on supporting your own mental health in COVID-19 and beyond.
I'M SO TIRED, I HAVEN'T SLEPT A WINK, I'M SO TIRED, MY MIND IS ON THE BLINK - DR. JAN WILLEM COHEN TERVAERT
Fatigue is a complex phenomenon and an important health concern in many patients with systemic Sclerosis. Unfortunately, no curative treatment has yet been identified. Fatigue does not seem to be associated with disease activity and/or progression. Alternative approaches to therapy will be discussed.
WHAT TO EXPECT WITH TEN OR MORE YEARS OF SCLERODERMA AND HOW COVID AFFECTS SLCERODERMA - DR. JANET POPE
People living with scleroderma may have slightly worse outcomes with COVID-19 infection. They should consider getting all the COVID vaccinations that are offered, as immunity may be blunted due to an autoimmune disease and also if taking immune suppressing treatments. We do not expect a major flare after a vaccination.
After living with scleroderma for a decade or more, there are some features of scleroderma that may improve (likely because you get used to them or as an example less spasm of finger blood vessels may result in less Raynaud’s). Most organ involvement in scleroderma occurs early (lung fibrosis, kidney crisis) but lungs can worsen over time. Pulmonary hypertension certainly can occur late in disease (as both older age and longer disease duration seem to be risk factors). The gut involvement may worsen and some people with develop significant dryness of mucus membranes (dry eyes and mouth). There may be more pain and fatigue or the same amount and itch usually is a lot better as the skin is less inflamed over time. Function of the hands can worsen due to flexion contractures and scarred skin. This workshop will talk about what to expect after 10 or more years of scleroderma and also about COVID infection and scleroderma.
RESEARCH UPDATE: PROTEOMIC PROFILING OF SCLERODERMA PATIENT SERUM VIA DEEP LEARNING - DR. FEI GENG
Discover the world of protein biomarkers that can be used to characterize symptom classes, which describe the metabolic or immunodeficient state of patients during the progression of a specific disease, such as scleroderma. Learn about Dr. Geng's deep learning feature extractor which allows biomarker sets to be identified for each patient class.
SCLERODERMA LUNG DISEASE - DR. SINDHU JOHNSON
Scleroderma can affect the lungs, causing pulmonary hypertension and interstitial lung disease. In this presentation, I will discuss treatment options that are currently available on the market. I will highlight non-medications strategies to complement treatment. I will introduce innovative treatments on the horizon.
GASTROINTESTINAL INVOLVEMENT IN SCLERODERMA - DR. JANET POPE
Nearly everyone who lives with scleroderma (systemic sclerosis, SSc) has gut (GI) involvement. Nearly everyone has acid reflux due to poor contractions of the swallowing tube (esophagus) and the valve between the esophagus and stomach is inappropriately open so acid and stomach contents can flow in the wrong direction into the esophagus and mouth. This is uncomfortable and can lead to aspiration. Food can also get stuck in the esophagus or anywhere along the intestines. There can be bloating, gas and a feeling of being full early. Some people with scleroderma are constipated and others have diarrhea or both. There can also be fecal incontinence. There are treatments to help these symptoms such as high doses of proton pump inhibitors (PPIs) and drugs to improve contractions in the bowels can improve acid reflux. Sometimes too much bacteria grows in the upper bowel (as food is sitting there for longer and acid is suppressed from PPIs which normally kill bacteria so intermittent antibiotics may be needed. This workshop explains what may be happening in the GI tract in scleroderma and how to treat the problems.
KEYNOTE SESSION CANADIAN SCLERODERMA RESEARCH GROUP: WHO WE ARE & WHAT WE DO
Who is the Canadian Scleroderma Research Group (CSRG) and what do they do? Learn about the historical milestones that the CSRG has made and what strategies they have in place for the future to improve the lives of individuals living with systemic sclerosis.
CARING FOR LOVED ONES - DR. DANIELLE RICE
Learn about the unique experiences and challenges that caregivers of scleroderma patients face on a day-to-day basis. Discover the support services that can be useful for caregivers, including a caregiver book specific to scleroderma caregivers as well as other free resources in Canada that caregivers can access for their mental health and how to adjust to the role of a caregiver.
EXERCISE IS MEDICINE IN SYSTEMIC SCLEROSIS - DR. LESLEY ANN SAKETKOO
Virtually every aspect of systemic sclerosis can be beneficially impacted by exercise: inflammation, circulation, body warmth, GI, skin, musculoskeletal and lung health. The therapeutic underpinnings of exercise target the specific mechanisms behind the pervasive SSc-disease biological, physical and psychological manifestations. This session is intended to empower people living with scleroderma with the knowledge of the exercise and physical activity on the many manifestations of systemic sclerosis.
PROMISING NEW SCLERODERMA MEDICATIONS: A LOOK INTO THE FUTURE - DR. JOANNA HARPER
Scleroderma is a complicated condition with a myriad of symptoms, which results in each patient having a unique experience with some commonalities. This phenomenon makes research for new therapies difficult. Despite this, researchers are paving the way with newly approved medications and promising new drugs in development. This workshop is designed to explain these complexities and shed light on the future of scleroderma treatment.
CELEBRATING GOOD THINGS - DR. LEE SHAPIRO
Celebration is not the initial reaction to diagnosis of scleroderma, we know. However, living with this illness may lead to further wisdom, empowerment, and community.
SCLERODERMA 101: NEWLY DIAGNOSED, NOW WHAT? - DR. MAGGIE LARCHE
You or a loved one has been recently diagnosed with scleroderma. Now what? This session will provide an in-depth overview of scleroderma, breakdown the scleroderma terminology, explore the options of self-directed care and medical treatments, and outline some of the helpful resources to aid you in your journey.
SCLERODERMA RESEARCH UPDATE - DR. MARIE HUDSON
This presentation will highlight some recent advances in the treatment of scleroderma, in particular skin fibrosis, interstitial lung disease and pulmonary arterial hypertension. Some of the most promising treatments on the horizon will also be summarized.
Please note that Suzy & Scott Munnoch have a shared presentation for their session.