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.
Here's what you can do to make the most of this important role.