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On June 29th, recognized globally as World Scleroderma Day, our collective efforts reach a pinnacle. This day marks a time when we come together to intensify our commitment to advocacy, awareness, patient support, and ongoing research. Throughout June, we dedicated our efforts to raising awareness for this rare disease with our Faces of Scleroderma social media campaign. This campaign aimed to ensure that people know what scleroderma is, its symptoms, and the different types of the disease, making it more recognizable to everyone. We decided to highlight the multifaceted nature of Scleroderma by asking; What is Scleroderma?
Scleroderma, recognized as the most common rare disease, is a chronic condition affecting the connective tissues in our bodies, leading to the hardening and tightening of the skin. As an autoimmune disease, it causes the immune system to mistakenly attack the body's own tissues. This complex disease not only impacts the skin but can also affect internal organs, resulting in painful complications. Although there is no cure yet, treatments are available to manage symptoms and prevent further issues, and ongoing research continues to offer hope. There are two main types of Scleroderma: Localized Scleroderma, which may affect the skin and sometimes underlying tissues, and Systemic Scleroderma (Systemic Sclerosis), which can impact both the skin and various organs, including the heart, lungs, kidneys, and digestive tract.
The symptoms of scleroderma are diverse and can affect various parts of the body. These symptoms include Raynaud’s phenomenon, kidney involvement, heart and lung involvement, skin changes, digestive tract issues, and mental health concerns.
Living with scleroderma or being a caretaker for a loved one with scleroderma can be challenging, but with proper treatment and support, patients can lead fulfilling lives. Here are some tips for managing life with scleroderma:
Stay Informed: Learning about the disease helps you feel in control and discover new ways to manage symptoms. Staying informed also enables you to better advocate for your health and make informed decisions about your care. Join our Newsletter to learn more about current research and advancements.
Build a Support Network: Connect with support groups in your local area to share experiences and gain valuable insights from others who understand what you’re going through. Additionally, seek support from friends and family, as their encouragement can provide emotional strength and practical assistance.
Regular Medical Care: Engage in regular check-ups with healthcare providers to monitor and manage symptoms effectively. Keeping track of your symptoms using tools like symptom diaries, medication lists, personal medical history documents, and appointment notes can help you make the most of your doctor's visits and ensure you receive the best care possible.
Self-Care: Emphasize the importance of a balanced diet, regular exercise, and stress management techniques. Maintaining a healthy lifestyle can improve your overall well-being and help you cope better with any daily challenges.
World Scleroderma Day provides an opportunity to learn more about the disease and raise awareness within our local and national communities. By coming together, we can advocate for more research, better treatments, and increased support for patients and their families.
Learning about scleroderma and sharing information can significantly raise awareness. By understanding the disease, you empower yourself and those around you to recognize its symptoms and impacts. Participate in our
# MySclerodermaStory campaign to share your experiences and spread the word. Sharing your story not only inspires others but also plays a crucial role in raising awareness.
Donations to Scleroderma Canada play a crucial role in supporting research and providing patient assistance. By donating, you help drive advancements in medical research that aim to find better treatments and, eventually, a cure. Additionally, your support enables the development of resources and programs that directly assist patients and their families, improving their quality of life.
To advocate for scleroderma research and patient care, consider several impactful actions. Arrange meetings with your local provincial or territorial government representative to discuss the importance of funding and policies. Write emails to your Premier and Health Minister emphasizing the need for support and research initiatives. Share your personal story with the media to raise awareness and advocate for improved patient care. Utilize social media platforms like Facebook and Twitter to amplify messages, share information, and engage with others in the scleroderma community. By liking, sharing, and retweeting posts, you can contribute to spreading awareness and encouraging support for those affected by scleroderma
Today, on World Scleroderma Day, we reflect on the strides made in raising awareness and supporting those affected by Scleroderma. Through initiatives like our Faces of Scleroderma campaign and # MySclerodermaStory, we've aimed to educate and inspire action within our communities. Join us in our efforts by participating in our upcoming Instagram and Facebook live tour of a scleroderma research lab at 10:30 AM EST. Whether you tune in live or watch later, your support helps drive advancements towards better treatments and, ultimately, a cure.
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