DOCUMENTS ON VARIOUS TOPICS RELATED TO SCLERODERMA
What is 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
Raynaud’s Phenomenon and Digital Ulcers
The most common and earliest problem observed in systemic sclerosis is Raynaud’s phenomenon (RP). This phenomenon is due to a narrowing of the blood vessels in the fingers caused by exposure to cold and strong emotions, and is manifested by a change in colour of the fingers, which turn white, then blue and finally red… 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 * NEW
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
Bone Health & Scleroderma
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
Scleroderma in Children *NEW
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
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
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
Raynaud’s Phenomenon and Scleroderma – related digital ulcers (March 2016) by Dre Alena Ikic
Information booklet for Scleroderma patients and their family members/informal caregivers.
Systemic Sclerosis (SSc) is an autoimmune disease that can affect various organs, in addition to the skin. In almost all cases, the thickening and loss of flexibility of the skin affect the fingers. Raynaud’s phenomenon is very common in SSc patients. It can sometimes lead to painful fingertip ulcers… Read more
Medication and treatments
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
Information pamphlet on natural health products (May 2016)
Natural health products (NHPs) are naturally occurring substances that are used to restore or maintain good health. They are often made from plants, but can also be made from animals, microorganisms and marine sources… 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
The scleroderma patient-centered intervention network and the SPIN-HAND program *NEW
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
Health Management Binder 2019
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
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
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
Miscellaneous articles and other publications
Sexuality and Scleroderma
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
Nutrition and Scleroderma
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
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
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.
Autologous Hematopoietic Stem Cell Transplantation vs Intravenous Pulse Cyclophosphamide in Diffuse Cutaneous Systemic Sclerosis