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The relationship between scleroderma and your health is one that you and your healthcare team should communicate openly about. Become educated about your condition, join (or start) a support group, and don't be afraid to mention any changes in your condition to your doctor. Many treatment options are available if you have scleroderma, and your health will likely improve if you stay well informed and seek support.

What You Need to Know About Scleroderma and Your Health

Although your doctors direct your scleroderma treatments, 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. The following is a list of what you can do to make the most of this important role:
  • Get educated: Knowledge is your best defense against this disease. For your own benefit, you should learn as much as you can about scleroderma and use this information to educate the people in your support network.
  • 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; and when you're depressed. You should also look for a scleroderma support group in your community by calling a national scleroderma organization. If you can't find a support group, you may want to consider organizing one.
  • Assemble a healthcare 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 confirming a scleroderma diagnosis can be difficult and may take a long time. Find a doctor with experience treating people with systemic sclerosis and localized scleroderma. Then, even if you don't yet have a diagnosis, you will get understanding and the right treatment for your symptoms.

    (Click Scleroderma Symptoms for more information about the symptoms of this disease.)
  • Speak up: When you have problems or notice changes in your symptoms, don't feel too self-conscious to speak up during your appointment or even call your doctor or another member of your healthcare team. No problem is too small to inquire about, and early scleroderma treatment can make the disease more manageable for you and your healthcare 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 healthcare team for help. You may benefit from speaking with a psychologist or social worker or from using a medication.
  • Learn coping skills: Skills like meditation, calming exercises, and relaxation techniques may help you cope with emotional difficulties, as well as help relieve symptoms like pain and fatigue. Ask a member of your healthcare 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.
Written by/reviewed by:
Last reviewed by: Arthur Schoenstadt, MD
Last updated/reviewed:
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