Mental Health Matters
Remember, no one needs to travel their healthcare journey alone.
Any diagnosis can be overwhelming. Many other individuals are also living with scleroderma and share the same feelings.
Contact your physician for additional support. If you’re struggling with a health condition, it can be helpful to seek out support from others who have gone through similar experiences. You may want to consider joining a support group, finding a mentor, or connecting with patient advocacy organizations that can offer guidance and resources.
You may also consider seeing a mental health specialist like a therapist. They can help to teach you how to adopt healthy coping skills as you navigate life with scleroderma.
Skin and Face Changes
Changes to your face and skin may be distressing and stigmatizing, making it difficult to recognize yourself.
Physical Limitations
You may experience physical and mental fatigue, which hinders daily tasks.
Social Life Roles
Struggling in everyday roles (working, being a mom, dad, husband, and wife) and a decreased independence.
Navigating the Uncertainty of Your Diagnosis
Navigating the unpredictable path of an illness can be a challenging and daunting task.
Feeling Alone & Misunderstood
Many people suffer from illnesses that are not visible to others. This can make it difficult for them to seek support from others.
Gradual Acceptance and Relative Optimism
Adapting to change and accepting limitations, taking a positive spin, cautious hoping, empowering relationships, and valuing medical support.
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.