Table of Contents What Is Scleroderma? What Are the Different Types of Scleroderma? What Causes Scleroderma? Who Gets Scleroderma? How Can Scleroderma Affect My Life? Symptoms of Scleroderma What Other Conditions Can Look Like Scleroderma? Scleroderma Treatment How Can I Play a Role in My Health Care? Scleroderma Research More Questions? Keeping on Top of Your Condition

How Can I Play a Role in My Health Care?

Although your doctors direct your treatment, you are the one who must take your medicine regularly, follow your doctor's advice, and report any problems promptly. In other words, the relationship between you and your doctors is a partnership, and you are the most important partner. Here's what you can do to make the most of this important role:

• Get educated: Knowledge is your best defense against this disease. Learn as much as you can about scleroderma, both for your own benefit and to educate the people in your support network (see below).
  
  
• Seek support: Recruit family members, friends, and coworkers to build a support network. This network will help you get through difficult times: when you are in pain; when you feel angry, sad, or afraid; when you're depressed. Also, look for a scleroderma support group in your community by calling a national scleroderma organization. (See national resources for scleroderma.) If you can't find a support group, you might want to consider organizing one.
  
  
• Assemble a health care team: You and your doctors will lead the team. Other members may include physical and occupational therapists, a psychologist or social worker, a dentist, and a pharmacist.
  
  
• Be patient: Understand that a final diagnosis can be difficult and may take a long time. Find a doctor with experience treating people with systemic and localized scleroderma. Then, even if you don't yet have a diagnosis, you will get understanding and the right treatment for your symptoms.
  
  
• Speak up: When you have problems or notice changes in your condition, don't feel too self-conscious to speak up during your appointment or even call your doctor or another member of your health care team. No problem is too small to inquire about, and early treatment for any problem can make the disease more manageable for you and your health care team.
  
  
• Don't accept depression: While it's understandable that a person with a chronic illness like scleroderma would become depressed, don't accept depression as a normal consequence of your condition. If depression makes it hard for you to function well, don't hesitate to ask your health care team for help. You may benefit from speaking with a psychologist or social worker or from using one of the effective medications on the market.
  
  
• Learn coping skills: Skills like meditation, calming exercises, and relaxation techniques may help you cope with emotional difficulties as well as help relieve pain and fatigue. Ask a member of your health care team to teach you these skills or to refer you to someone who can.
  
  
• Ask the experts: If you have problems doing daily activities, from brushing your hair and teeth to driving your car, consult an occupational or physical therapist. They have more helpful hints and devices than you can probably imagine. Social workers can often help resolve financial and insurance matters.