Coping With Scleroderma

Living With Scleroderma: 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 that you are just being lazy. On the other hand, they may be overly concerned and eager to help you, not allowing you to do the things you are able to do or giving up their own interests and activities to be with you.
It is important to learn about the type of scleroderma that you have and to share information with your family. Involving your family in counseling or a support group may help them better understand the disease and how they can best help you.

Living With Scleroderma: Sexual Relations

Sexual relationships can be affected when systemic scleroderma (systemic sclerosis) enters the picture. For men, the disease's effects on the blood vessels can lead to problems achieving an erection (impotence). In women, damage to the moisture-producing glands can cause vaginal dryness, which can make intercourse painful. People of either sex may find they have difficulty moving the way they once did, and they may be self-conscious about their appearance or afraid that their sexual partner will no longer find them attractive. With communication between partners, good medical care, and perhaps counseling, many of these changes can be overcome.

Living With Scleroderma: Pregnancy and Childbearing

In the past, women with systemic scleroderma were often advised not to have children. But thanks to better medical treatment and a better understanding of the disease itself, that advice is changing. (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 this disease can have safe pregnancies and healthy babies if they follow some precautions.
After you develop scleroderma, it is important to wait a few years before attempting a pregnancy. During the first three 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 organ problems within three years of developing the disease, chances are you won't, and pregnancy should be safe. However, it is important to have both your disease and your pregnancy monitored regularly. You will need to stay in close touch with your doctor who treats you for scleroderma, as well as an obstetrician experienced in guiding high-risk pregnancies.

Scleroderma Disease

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