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What is scleroderma?<\/span><\/a><\/p>\n 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 \u201cautoimmune\u201d diseases in which the body\u2019s antibodies attack its own cells\u2026 Read more<\/em><\/a><\/span><\/span><\/p>\n <\/p>\n The Different Forms of Scleroderma<\/a><\/span><\/p>\n The name \u00abscleroderma\u00bb is derived from the Greek words \u00absclero\u00bb, meaning hard and \u00abderma\u00bb, 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)\u2026 Read more<\/em><\/span><\/a><\/p>\n <\/p>\n Raynaud’s Phenomenon and Digital Ulcers<\/a><\/span><\/p>\n 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\u2026 Read more<\/em><\/span><\/a><\/p>\n <\/p>\n Pulmonary Fibrosis in Systemic Sclerosis<\/a><\/span><\/p>\n 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\u2026 Read more<\/em><\/span><\/a><\/p>\n <\/p>\n Pulmonary Arterial Hypertension in Systemic Sclerosis<\/a><\/span><\/p>\n 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\u2026 Read more<\/em><\/span><\/a><\/p>\n <\/p>\n Cardiac Involvement in Systemic Sclerosis<\/a><\/span><\/p>\n 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\u2026 Read more<\/em><\/span><\/a><\/p>\n <\/p>\n Gastrointestinal Involvement in Systemic Sclerosis<\/a><\/span><\/p>\n 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\u2026 Read more<\/em><\/span><\/a><\/p>\n <\/p>\n The Kidney in Systemic Sclerosis<\/a><\/span><\/p>\n 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\u2026 Read more<\/em><\/span><\/a><\/p>\n <\/p>\n Scleromyositis: a specific muscle manifestation of scleroderma * NEW<\/span><\/span><\/a><\/p>\n 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<\/em><\/a><\/span><\/span><\/p>\n <\/p>\n Bone Health & Scleroderma\u00a0<\/a><\/span><\/p>\n 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\u2026 Read more<\/em><\/a>\u00a0<\/span><\/p>\n <\/p>\n Scleroderma in Children<\/span><\/a> *NEW<\/span><\/span><\/p>\n There are two types of scleroderma in children.<\/p>\n The first is called \u00ablocalized scleroderma\u00bb. This is the most common in children. It affects the skin in one area of the body only. The other type is called \u00absystemic scleroderma\u00bb. This can affect many areas of the skin, as well as the organs of the body. It is rare in children\u2026 Read more<\/em><\/a><\/span><\/span><\/p>\n <\/p>\n How to diagnose Systemic Sclerosis<\/a><\/span><\/p>\n 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 \u00absausage-like\u00bb 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\u2026 Read more<\/em><\/span><\/a><\/span><\/p>\n <\/p>\n Capillaroscopy and complementary observations<\/a><\/span><\/p>\n 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\u2026 Read more<\/em><\/span><\/a><\/p>\n <\/p>\n How does Systemic Sclerosis evolve?<\/a><\/span><\/p>\n 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\u2026 Read more<\/em><\/a><\/span><\/p>\n <\/p>\n Raynaud’s Phenomenon and Scleroderma – related digital ulcers (March 2016) by Dre Alena Ikic<\/a><\/span><\/p>\n Information booklet for Scleroderma patients and their family members\/informal caregivers.<\/span><\/p>\n 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\u2019s phenomenon is very common in SSc patients. It can sometimes lead to painful fingertip ulcers\u2026 Read more<\/em><\/span><\/a><\/span><\/p>\n <\/p>\n Scleroderma Medications Guide (Canada)<\/a><\/span><\/p>\n Although there isn\u2019t 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\u2026<\/span> Read more<\/em><\/span><\/a><\/p>\n <\/p>\n Cellular therapies for scleroderma<\/a><\/span><\/p>\n 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\u2026 Read more<\/em><\/span><\/a><\/span><\/p>\n <\/p>\n Information pamphlet on natural health products (May 2016)<\/span><\/a><\/p>\n 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\u2026 Read more<\/em><\/span><\/a><\/span><\/p>\n <\/p>\n How to prepare for an Appointment with your Health Care Team<\/a><\/span><\/p>\n 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\u2026 Read more<\/em><\/span><\/a><\/span><\/p>\n <\/p>\n The scleroderma patient-centered intervention network and the SPIN-HAND program *NEW<\/span><\/span><\/a><\/p>\n 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\u2026<\/span> Read more<\/em><\/span><\/a><\/p>\n <\/p>\n Health Management Binder 2019<\/a><\/span><\/p>\n 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\u2026 Read more<\/em><\/span>\u00a0<\/a><\/span><\/p>\n <\/p>\n Guide for Informal Caregivers (March 2016)<\/a><\/span><\/p>\n 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\u2026 Read more<\/em><\/span><\/a><\/span><\/p>\n <\/p>\n Dental Care in Scleroderma (October 2010)<\/a><\/span><\/p>\n 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\u2019s educational sheets can be a good source of information for any health professional)\u2026 Read more<\/em><\/span><\/a><\/span><\/p>\n <\/p>\n \t\t<\/div>\n\n\t\t <\/div>\n <\/p>\n COVID-19 and vaccination<\/a><\/span><\/p>\n 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\u2026 Read more<\/em><\/span><\/a><\/span><\/p>\n <\/p>\n Vaccination against COVID-19 – Additional dose of COVID-19 vaccine in immunocompromised individuals<\/a><\/span><\/p>\n 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\u2026 Read more<\/em><\/span><\/a><\/span><\/p>\n <\/p>\n Vaccination against COVID-19 (as of August 31, 2022) *NEW<\/span><\/a><\/span><\/p>\n Fall vaccination… Read more<\/em><\/span><\/a><\/p>\n \t\t<\/div>\n\n\t\t <\/div>\n <\/p>\n Sexuality and Scleroderma<\/a><\/span><\/p>\n 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\u2019s sexuality. This sheet explains the main difficulties and how to solve them\u2026 Read more<\/em><\/a><\/span><\/span><\/p>\n <\/p>\n Pregnancy and Systemic Scleroderma<\/a><\/span><\/p>\n 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\u2026 Read more<\/em><\/span><\/a><\/span><\/p>\n <\/p>\n Nutrition and Scleroderma<\/a><\/span><\/p>\n 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\u2026 Read more<\/em><\/span><\/a><\/span><\/p>\n <\/p>\n Nutrition and Recipe Book for people with Scleroderma 2020<\/a><\/span><\/p>\n If you\u2019re 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\u2026 Read more<\/em><\/span><\/a><\/span><\/p>\n <\/p>\n About Scleroderma in Quebec (revision 2018) by Dre France Joyal<\/a><\/span><\/p>\n 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\u2026 \n\t\t\t\tMedication and treatments\t\t\t<\/h3>\n\t\t\n\t\t
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