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 Scleroderma Affect My Life?

Having a chronic disease can affect almost every aspect of your life, from family relationships to holding a job. For people with scleroderma, there may be other concerns about appearance or even the ability to dress, bathe, or handle the most basic daily tasks. Here are some areas in which scleroderma could intrude.

Appearance and self-esteem: Aside from the initial concerns about health and longevity, one of the first fears people with scleroderma have is how the disease will affect their appearance. Thick, hardened skin can be difficult to accept, particularly on the face. Systemic scleroderma may result in facial changes that eventually cause the opening to the mouth to become smaller and the upper lip to virtually disappear. Linear scleroderma may leave its mark on the forehead. Although these problems can't always be prevented, their effects may be minimized with proper treatment and skin care. Special cosmetics--and in some cases, plastic surgery--can help conceal scleroderma's damage.

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.

* Brand names included in this booklet are provided as examples only, and their inclusion does not mean that these products are endorsed by the National Institutes of Health or any other Government agency. Also, if a particular brand name is not mentioned, this does not mean or imply that the product is unsatisfactory.

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. 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's important to learn as much about your form of the disease as you can and share any information you have with your family. Involving them in counseling or a support group may also help them better understand the disease and how they can help you.

Sexual relations: Sexual relationships can be affected when systemic scleroderma enters the picture. For men, the disease's effects on the blood vessels can lead to problems achieving an erection. In 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. 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 or at least worked around.

Pregnancy and childbearing: In the past, women with systemic scleroderma were often advised not to have children. But thanks to better medical treatments 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 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 organ problems within 3 years of the disease's onset, chances are you won't, and pregnancy should be safe. But it is important to have both your disease and your pregnancy monitored regularly. You'll probably need to stay in close touch with the doctor you typically see for your scleroderma as well as an obstetrician experienced in guiding high-risk pregnancies.