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“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

 

New update:

New educational sheet: 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…

 

New:

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 : February 22, 2024