SPIN is seeking individuals living with scleroderma to participate in an online group discussion (via Zoom) about their experiences with pain and how they receive adequate help for it. People living with scleroderma emphasize the impact of pain on their quality of life, but pain is often overlooked in research and clinical care.
This study aims to develop a tool that will better assess different aspects of pain in scleroderma, including pain sources, patterns of pain, current pain management services, and barriers to improving pain management.
Click here to learn more about the study and view the consent form: https://spinsclero.qualtrics.com/jfe/form/SV_ahjZgpGz9gYJvUy
Scleroderma Quebec: Your Online Resource for Understanding and Managing Scleroderma
Discover Scleroderma Quebec’s online platform, designed to help people living with scleroderma better understand their condition and find relevant information on symptoms, treatments, and research advancements, primarily in Quebec and Canada. Our site offers videos, informational sheets, and patient forums open to everyone…Read more
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Discover our educational sheets on scleroderma
At Sclerodermie Quebec, our mission is to support you in your understanding of scleroderma. In collaboration with health specialists, we have developed a series of educational sheets to enlighten you about this complex condition. These resources cover, among other things:
- The basic principles of scleroderma, its manifestations, and treatment options.
- A detailed analysis of the symptoms for a better understanding of their impacts.
- The importance of emotional support and the value of support networks for living with resilience and hope.
These sheets are a complement to the advice of your health specialist, enriching your dialogue with professionals and helping you take an active role in your care journey.
We invite you to explore our educational sheets, designed to simplify access to information and equip you with the necessary tools for a comprehensive approach to managing scleroderma. Join our community to benefit from ongoing support and progress together, enriched by a network of mutual aid and knowledge exchange… Read more
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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.
For more information…Read more
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Scleroderma Quebec Support Groups
Explore the scleroderma support groups offered by Scleroderma Québec, led by trained volunteers who often are sufferers themselves. These spaces foster mutual support and provide strategies for managing life with the disease, welcoming newly diagnosed individuals, caregivers, or long-standing patients.
Commitment and Safety: Sessions focused on validated information about symptoms and treatments aim to strengthen your support network and enhance daily management of scleroderma. They assist in confidently navigating the disease’s complexities.
Important Notice for Participants: While providing emotional support and facilitating the exchange of experiences, our groups do not substitute for professional medical advice. Promoting treatments not approved by scleroderma specialists is prohibited, underscoring our commitment to practices validated by recognized experts.
For more information…Read more
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Patient-reported outcomes in scleroderma: why it matters?
This new educational sheet illuminates the management of scleroderma, combining clinical expertise and patient experiences. It highlights the use of questionnaires, such as HAQ, SF-36, and PROMIS-29 among others, incorporating patient experience into the medical evaluation. These tools provide a more comprehensive view of the impact of scleroderma, including physical, emotional, and psychosocial aspects.
These questionnaires, while complementary to clinical analysis, do not replace it but rather enrich the evaluation, promoting personalized care. The educational sheet illustrates how the combination of these methods improves the understanding and treatment of the disease.
We encourage consulting this educational sheet to understand the importance of a comprehensive medical evaluation, combining clinical expertise and patient experience, essential in the fight against scleroderma…Read more
Autoantibodies in scleroderma
Scleroderma is a complex disease that is the subject of extensive research to understand the pathogenic mechanisms and identify new therapeutic targets. This article focuses on the dysfunction of the immune system, specifically the particular antibodies found in the blood of people with scleroderma…Read more
Enhance Your Knowledge of Scleroderma with Our Informative Capsules
Created in February 2023, these capsules are notable for their relevance and accessibility, offering a valuable resource for those seeking to understand this condition. Watch them for an introduction to scleroderma, presented in a clear and expert manner, yet accessible for all audiences.
Please Note: Each capsule is accessible through the following links:
February 24, 2023 – Capsule 1 What is Scleroderma? Caroline Côté, spokesperson for Scleroderma Quebec, provides us with insights into this autoimmune disease. https://f.io/C8ROx9sf
February 24, 2023 – Capsule 2 What is Pulmonary Arterial Hypertension associated with Scleroderma? Caroline Côté explains the symptoms and manifestations of PAH. https://f.io/BL6uvIyy
February 24, 2023 – Capsule 3 The Raynaud’s phenomenon is the most common symptom of scleroderma. Caroline Côté elaborates on this topic in this capsule. https://f.io/_4foHdGN
February 24, 2023 – Capsule 4 Caroline Côté, spokesperson for Scleroderma Quebec, explains pulmonary fibrosis, a condition characterized by shortness of breath or a dry cough. https://f.io/bi2DHLV4
February 24, 2023 – Capsule 5 Involvement of the digestive system, particularly the esophagus, is frequent in people with scleroderma. Discover more about digestive system symptoms in this animated capsule hosted by Caroline Côté, spokesperson for Scleroderma Quebec. https://f.io/JIwzo7OL
February 24, 2023 – Capsule 6 Caroline Côté, spokesperson for Scleroderma Quebec, discusses a severe kidney complication that occurs in 5% of patients: scleroderma renal crisis. https://f.io/qo-olWLC
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Last updated : April 17, 2024