No two scleroderma journeys are the same, but there are common experiences along the way. No matter where you or your child are in your journey, or what type of scleroderma you have, the National Scleroderma Foundation can help you find your best path.
Scleroderma symptoms can present differently in different people and can also be caused by other diseases. Visit “Symptoms of Scleroderma” and other pages in the “Understanding Scleroderma” section of this website to learn about scleroderma symptoms so that you can have an informed discussion with your rheumatologist.
There are several tests doctors use to discover the cause of your symptoms. Visit “Tests & Diagnosis” to learn how these tests are performed and what the results mean. Different medical disciplines will be involved depending on the symptoms you experience; however, rheumatology is the specialty aligned specifically with scleroderma.
Scleroderma can be difficult to diagnose for many reasons, which is why it’s important to be seen by a rheumatologist or pediatric rheumatologist who specializes in scleroderma. The more you understand the diagnostic process, the more you’ll be able to navigate through it.
Treatment is a positive step toward living well with scleroderma. While there is no proven cure for scleroderma, much can be done to prevent, minimize, or alleviate its effects and symptoms. Treatments work differently for each person. Cooperating closely with a rheumatologist experienced in scleroderma helps tailor a treatment program to your specific needs.
Living with a rare disease can easily create a feeling of isolation. Connect with others who are on the same journey and gain strength from sharing common experiences. Connect and learn at the National Scleroderma Conference, or at a local support group or education program. The Foundation fosters a community spirit that builds bonds of encouragement.
Strengthened by knowledge about symptom management and by meaningful connections to others traveling alongside you, you find opportunities to advance the mission of the National Scleroderma Foundation and increase awareness. Connect with your local chapter. Be a volunteer. Join a Stepping Out to Cure Scleroderma fundraising walk.
Living your life fully is the ultimate goal. Finding your best path means accepting and adjusting to keep moving forward. People with scleroderma can thrive and become powerful forces. Increase awareness, help others affected by scleroderma, drive fundraising for support, education, and research, and advocate for better public policies that affect people with scleroderma.