Supportive Partnerships
Supportive Partnerships
For many people, living with scleroderma is a shared experience that involves their spouse, significant other, family, or friends. People who provide support are often called caregivers. Still, caregiving implies that one person offers care while the other receives it.
In many cases, supporting someone relies on teamwork and sharing responsibilities with the person with the condition. Because this setup is more of a partnership, these support people are called “care partners.”
Below, you will find resources for being a great care partner and taking good care of yourself.
Learn and Connect
As a care partner, you can learn about the condition, connect with support groups, and learn effective communication strategies.
Take Care of Yourself
As a care partner, it’s crucial for you to prioritize self-care. Learn more about the necessary steps to ensure your well-being.
Avoid Care Partner Burnout
Being family or friends of an individual with a rare diagnosis can lead to becoming burned out. Select the link below to learn more about how to avoid burnout feeling.
Emotional Wellbeing
If you feel overwhelmed or unprepared as a care partner, know you aren’t alone. Numerous resources and support groups are available to help you navigate the challenges and stresses of your role.
The Scleroderma Toolkit was put together by a team at the University of Michigan’s Telehealth and Rehabilitation Advancing Chronic Condition Research (TRACC-R) Center. The Foundation is grateful to the University of Michigan for sharing this material with the scleroderma community. The Scleroderma Toolkit with funding from the Rheumatology Research Foundation (Lawren H. Daltroy Preceptorship in Health Communication).
Disclaimer: The National Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials or studies referenced in this toolkit. Information is provided to keep the community informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with your healthcare provider team for proper evaluation and treatment.
The Scleroderma Toolkit
Discover helpful tools that can help you navigate the scleroderma journey with confidence.