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 Scelroderma: careing for yourself

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Guide to treatment of   Scleroderma

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Caring for yourself: Tight, hard connective tissue in the hands can make it difficult to do what were once simple tasks, such as brushing your teeth and hair, pouring a cup of coffee, using a knife and fork, unlocking a door, or buttoning a jacket. If you have trouble using your hands, consult an occupational therapist, who can recommend new ways of doing things or devices to make tasks easier. Devices as simple as Velcro fasteners and built-up brush handles can help you be more independent.

Family relationships: Spouses, children, parents, and siblings may have trouble understanding why you don't have the energy to keep house, drive to soccer practice, prepare meals, and hold a job the way you used to. If your condition isn't that visible, they may even suggest you are just being lazy.

Sexual relations:  For women, damage to the moisture-producing glands can cause vaginal dryness that makes intercourse painful. People of either sex may find they have difficulty moving the way they once did.

Pregnancy and childbearing:  (Pregnancy, for example, is not likely to be a problem for women with localized scleroderma.) Although blood vessel involvement in the placenta may cause babies of women with systemic scleroderma to be born early, many women with the disease can have safe pregnancies and healthy babies if they follow some precautions.

One of the most important pieces of advice is to wait a few years after the disease starts before attempting a pregnancy. During the first 3 years, you are at the highest risk of developing severe problems of the heart, lungs, or kidneys that could be harmful to you and your unborn baby.

If you haven't developed severe organ problems within 3 years of the disease's onset, your chances of such problems are less and pregnancy would be safer.

How Can I Play a Role in My Health Care?

 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 For More Information.) 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.
  • 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: Meditation, calming exercises, and relaxation techniques may help you cope with emotional difficulties, and 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.
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