DOCUMENTS ON VARIOUS TOPICS RELATED TO SCLERODERMA
Sjögren’s syndrome associated with Systemic Scleroderma
Systemic scleroderma is an autoimmune disease that affects the functioning of small blood vessels and leads to excessive scarring. Individuals with scleroderma are at a higher risk of developing other autoimmune diseases, such as Sjögren’s syndrome. In this article, we will discuss what Sjögren’s syndrome is, and how it is diagnosed, treated, and monitored… Read more
Dermatological Interventions for Facial Manifestations in Scleroderma
As a result of scleroderma, many patients experience functional and cosmetic impairment of the face. This may affect the quality of life and psychological health of patients. Unfortunately, despite the increasing use of cosmetic procedures in the general population, there is a lack of evidence evaluating the safety and effectiveness of these procedures in scleroderma patients… Read more
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
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
What is scleroderma?
Scleroderma, or systemic sclerosis, is a relatively misunderstood chronic disease affecting about one in 5,000 people. In British Columbia, 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
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
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
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
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
Medication and treatments
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
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
Intravenous immunoglobulin and scleroderma
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
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
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
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… 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