Articles and Publications
Understanding Scleroderma
Scleroderma, or systemic sclerosis, is a relatively misunderstood chronic disease affecting about one in 5,000 people. In Quebec, it is estimated that several thousands of people suffer from scleroderma. Disease onset usually occurs in the fourth decade of life and is five time more prevalent in women than men. Scleroderma is one of the so-called “autoimmune” diseases in which the body’s antibodies attack its own cells… Read more
The Different Forms of Scleroderma
The name «scleroderma» is derived from the Greek words «sclero», meaning hard and «derma», meaning skin. Thus, the characteristic feature of scleroderma is the hardening of the skin. Scleroderma is generally divided into two main forms: localized scleroderma and systemic scleroderma (or systemic sclerosis)… Read more
There are two types of scleroderma in children.
The first is called «localized scleroderma». This is the most common in children. It affects the skin in one area of the body only. The other type is called «systemic scleroderma». This can affect many areas of the skin, as well as the organs of the body. It is rare in children… Read more
How to diagnose Systemic Sclerosis
The diagnosis of systemic sclerosis (SSc, systemic scleroderma) is usually based on the presence of a combination of symptoms and signs typical of systemic sclerosis: Raynaud’s phenomenon; skin thickening or puffy «sausage-like» swelling of the fingers; autoantibodies associated with systemic sclerosis in a blood sample; abnormalities in small blood vessels at the base of the nails; other skin and internal organ involvement associated with systemic sclerosis… Read more
How does Systemic Sclerosis evolve?
The evolution of systemic sclerosis is variable, depending on the extent of skin thickening (limited or diffuse systemic sclerosis), the presence of specific autoantibodies in the blood and the presence of internal organ involvement… Read more
Symptoms and Complications
Systemic Scleroderma and Cancer New
Some individuals diagnosed with systemic scleroderma may also face a concomitant cancer diagnosis. This article discusses the association between scleroderma and cancer, as well as issues and precautions related to the treatment of scleroderma and cancer… Read more
Dermatological Interventions for Facial Manifestations in Scleroderma
As a result of scleroderma, many patients experience functional and cosmetic impairment of the face. In this article, we explore some dermatological interventions used to address common facial manifestations of scleroderma… Read more
Calcinosis in Systemic Sclerosis
Systemic sclerosis (or scleroderma) is characterized by many skin changes, including calcinosis. In this article, we will discuss what is calcinosis, how it is diagnosed and available treatments… Read more
Sjögren’s syndrome associated with Systemic Scleroderma
In this article, we will discuss what Sjögren’s syndrome is, and how it is diagnosed, treated, and monitored… Read more
Raynaud’s Phenomenon and Digital Ulcers
Focused on treatment options, this guide presents various medical solutions to relieve Raynaud’s phenomenon and digital ulcers. It covers medications, emergency interventions for severe cases, and tips for avoiding aggravating factors, offering specialized support for more advanced situations… Read more
Pulmonary Fibrosis in Systemic Sclerosis
Pulmonary fibrosis is a common manifestation of systemic sclerosis, being present in about half of the patients. However, pulmonary fibrosis is severe in only about 15% of patients… Read more
Pulmonary Arterial Hypertension in Systemic Sclerosis
PAH in systemic sclerosis is due to an exaggerated and progressive narrowing of the small blood vessels in the lungs. This is caused, on the one hand, by the increased presence of molecules (chem[1]ical signals) that promote the contraction and obliteration of the pulmonary arteries… Read more
Cardiac Involvement in Systemic Sclerosis
Cardiac involvement occurs in 10 to 30% of patients with systemic sclerosis. Cardiac involvement occurs in both the limited and diffuse forms of the disease, but is generally more frequent and severe in patients with diffuse disease… Read more
Gastrointestinal Involvement in Systemic Sclerosis
The digestive tract is involved in nearly all systemic sclerosis patients and can be present even in the absence of symptoms in half of patients. The frequency is similar in diffuse and limited forms of systemic sclerosis. However, severe manifestations are uncommon, occurring in less than 10% of patients… Read more
The Kidney in Systemic Sclerosis
The kidneys play a critical role in removing chemical waste products from the body, maintaining body fluid volume and controlling blood pressure. Kidney abnormalities encountered in systemic sclerosis are relatively common and, fortunately, most often with few consequences… Read more
Scleromyositis: a specific muscle manifestation of scleroderma
The main symptom of myositis is usually muscle weakness, mainly in the shoulders and hips. People with myositis may have difficulty lifting their arms above their shoulders, lifting heavy objects, climbing stairs or getting up from a seat… Read more
The prevalence of osteoporosis is increased in people with scleroderma, affecting approximately 30% of individuals. This increased risk may be related to the presence of risk factors for osteoporosis, such as advanced age, early menopause use of glucocorticoid drugs, malabsorption related to bowel involvement, vitamin D deficiency and chronic inflammation… Read more
Diagnosis and Medical Follow-up
Capillaroscopy and complementary observations
Nailfold capillaroscopy is a simple, non-invasive, painless examination mainly performed on the hands that allows the study of small blood vessels, called capillaries, located around the nail beds. After depositing a drop of oil to make the skin more transparent, the periungual capillaries are observed under a microscope… Read more
Autoantibodies in scleroderma New
As we can see, the pathophysiology of SSc is complicated. These pathogenic mechanisms have been the subject of intensive research in order to understand their interrelationships and to find “weak points” in the pathophysiological cascades that may become new therapeutic targets. In this article, we will focus on the dysregulation of the immune system and, in particular, on the specific antibodies that are typically found in the blood of SSc patients…Read more
Patient-reported outcomes in scleroderma: why it matters? New
Scleroderma patients are the experts in how they feel and function. They are the only ones capable of describing first-hand the long list of symptoms associated with scleroderma, including Raynaud’s, skin changes, gastrointestinal problems and breathlessness to name a few, and how these impact their day-to-day life. They also have lived experience with the disfigurement and the complex psychosocial impacts of this disease…Read more
Scleroderma patients experience a broad spectrum of symptom manifestations. These medical issues cause there to be a need to visit a number of healthcare professionals. Please use this page to record visit to specialists sush as: Rheumatologists, Pneumologists, Cardiologists, Gastroenterologists, Dermatologists, Nephrologists, Vascular Surgeons, etc… Read more
Treatments and Therapies
Scleroderma Medications Guide (Canada)
Although there isn’t a cure for scleroderma, there are effective treatment options that can help alleviate symptoms and slow down disease progression. Current prescription and over-the-counter medication are designed to treat scleroderma by targeting: Inflammation, Autoimmunity, Vascular disease and Tissue fibrosis… Read more
Cellular therapies for scleroderma
Cell therapies involve the harvesting of healthy human cells (whether from a donor or even the patients themselves) which are then transfused into a patient to restore or repair a diseased cell or organ. The best known type of cell therapy is blood transfusions. Some cells used as cell therapies have long-lasting effects and are therefore valued for their regenerative properties… Read more
Intravenous immunoglobulin and scleroderma New
Intravenous immunoglobulin (IVIg) is used primarily in two types of diseases: immunodeficiencies and autoimmune diseases. In immunodeficiencies, the body does not produce enough antibodies, making it vulnerable to infections. In this situation, immunoglobulin treatments are used to replace the missing antibodies to help the body protect itself from infections.
In autoimmune diseases, the immune system is dysfunctional and produces antibodies that attack its own cells (autoantibodies). In this situation, the antibodies and other substances contained in IVIg could act by neutralizing the abnormal autoantibodies and interfering with the development and function of immune cells…Read more
Natural health products
This educational sheet provides information on natural health products, which are natural substances used to maintain or restore good health. It is important to mention that this presentation is particularly relevant for people with scleroderma, an autoimmune disease for which potentially dangerous interactions between natural health products and medications can have serious consequences. Natural health products evaluated by Health Canada have an NPN (Natural Product Number) or a DIN-HM (Homeopathic Medicine Number), which guarantees their safety and effectiveness when used according to the instructions on the label. However, it is important to note that even if a product is natural, it can have side effects and be toxic if not used properly. Therefore, it is crucial to consult a healthcare professional before taking a natural health product, especially for people with scleroderma who may be more vulnerable to adverse effects…Read more
The scleroderma patient-centered intervention network and the SPIN-HAND program
The SPIN-HAND program provides you with gentle hand exercises explicitly designed for people with scleroderma, with sections to help you develop a personalized program, set goals, and track your progress. Instructional videos demonstrate how to perform each exercise properly with pictures to illustrate common mistakes… Read more
Dental Care in Scleroderma (October 2010)
Living with scleroderma is a very demanding challenge. Even so, it is important to maintain good oral hygiene and to minimize oral health care problems. Not all dentists are familiar with scleroderma. (Scleroderma Quebec’s educational sheets can be a good source of information for any health professional)… Read more
Living with Scleroderma
Scleroderma is an autoimmune disease that consumes a portion of your energy. Among other factors, the fatigue you may experience can be linked to the inflammatory process, organ dysfunction, sleep disturbances, side effects of medication, nutritional deficiencies, mental and emotional stress, or reduced physical activity… Read more
When it comes to sexuality, there is no single ideal model. In the general population, at least one third of men and women experience sexual difficulties. Scleroderma can affect a patient’s sexuality. This sheet explains the main difficulties and how to solve them… Read more
Pregnancy and Systemic Scleroderma
If systemic scleroderma is well controlled and there is no cardiac, pulmonary, or renal involvement, there is a good chance of an uncomplicated pregnancy. Approximately 70-80% of women will have a successful pregnancy… Read more
For several people affected by scleroderma, acid reflux (or gastroesophageal) is a particularly bothersome, sometimes painful symptom of the disease. First, what is gastroesophageal reflux? It is acid reflux from the stomach to the esophagus, due to a malfunctioning lower esophagus sphincter (a valve that serves as a protective barrier) which, having lost its tone, can no longer close… Read more
Scleroderma and pain management
Don’t underestimate your power to act
Pain is: “An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.” (1) According to this definition by the International Association for the Study of Pain (IASP), this complex experience is not solely dependent on physical factors. Pain is always a personal experience that is influenced to varying degrees by biological, psychological, and social factors. Depending on its duration, pain can be described as acute or chronic. The IASP defines chronic pain as “pain that persists or recurs for more than 3 months”…Read more
How to prepare for an Appointment with your Health Care Team
Have your medication list up to date and note if there are any side effects to the medications. If you are not taking some of the medications as prescribed, it is important to report this to your doctor so that a fair assessment can be made of the effectiveness of the treatments… Read more
Accepting the diagnosis of scleroderma New
Someone who has difficulty accepting their diagnosis may need to grieve for their previous life before being able to adapt and accept their new reality. This process may include progressions and regressions. It is not necessarily linear, and it varies from one person to the other, depending on their interpretation of their situation and their ability to bounce back. Regardless of the path taken, it is important to respect the person’s pace…Read more
Managing anxiety and stress New
Everyone experiences anxiety and stress, this includes people with scleroderma. This article aims to demystify these two terms, to understand them, and to learn coping strategies…Read more
Support and Community
Scleroderma Quebec’s Support Groups: New
Scleroderma Quebec’s Support Groups meet in person or on Zoom for mutual support with the challenges of living with scleroderma. These groups are composed of people living with scleroderma and may also include spouses or other natural caregivers. They are led by one or more trained leaders who have taken a course specifically designed to equip them to facilitate the groups and to share pertinent information about living with scleroderma. The leaders are volunteers within the Scleroderma Quebec organization and most are themselves living with scleroderma… Read more
Guide for Informal Caregivers (March 2016)
About half of those who care for a spouse or a child have reported at least 5 symptoms of psychological distress and a third of them have had to see a healthcare professional for a medical condition resulting from their caregiving responsibilities… Read more
Miscellaneous
Nutrition and Recipe Book for people with Scleroderma 2020
If you’re holding this guide in your hands, it is safe to say that taking care of your health, or that of a loved one who is living with Scleroderma is really important to you. Audrey Potvin, nutrition and dietetic technician, designed this guide with the aim of giving you lots of food tips… Read more
About Scleroderma in Quebec (revision 2018) by Dre France Joyal
If you have been diagnosed with scleroderma but are afraid to learn what complications this disease could bring you, rely on your doctor to help you navigate the uncharted and rough seas. Before putting this book down, it is important that you be aware of the current state of scleroderma research and what Scleroderma Quebec is doing for you… Read more
Winter at last (revision 2018) by Dre France Joyal
To date, there is still no treatment of Raynaud’s phenomenon that addresses the root cause of this condition. The first line of treatment is protection against the cold along with smoking cessation and stopping medications that may lead to this clinical picture. Since there is currently no treatment for the underlying cause, medical management focuses primarily on relieving symptoms (coldness, whiteness), aim to reduce, if not avoid, too strong a reaction of the extremities to the cold… Read more
COVID-19
COVID-19 is the disease caused by the coronavirus SARS-CoV-2, a new virus first detected in December 2019 in the city of Wuhan, China. In March 2020, the World Health Organization declared the outbreak of COVID-19 a global pandemic… Read more
Vaccination against COVID-19 – Additional dose of COVID-19 vaccine in immunocompromised individuals
Immunocompromised individuals have a higher risk of complications with COVID-19 infection. They may also be less protected after two doses. An additional dose, preferably of a messenger RNA (mRNA) vaccine provides better protection against COVID-19… Read more
Vaccination against COVID-19 (as of August 31, 2022)
Fall vaccination… Read more
Publication of Éric Rich, M.D.
Éric Rich, M.D, FRCPC
Having earned his degree from Université de Montréal, and after starting his post-residency career in rheumatology, Dr. Eric Rich completed his postdoctoral training in clinical investigation at the University of Alabama, in Birmingham. He is currently head of the rhumatology department of the CHUM and is teaching undergraduate courses to students completing their residency. Dr. Rich has published over twenty scientific papers on rheumatoid arthritis, reactive arthritis, lupus, autoimmune myositis and scleroderma.