Having a chronic disease can affect almost every aspect of 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 & Self Esteem: Aside from the initial concerns about health and longevity, people with scleroderma can become concerned with how the disease will affect their appearance. Thick, hardened skin can be difficult to accept, particularly when present 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. Also, special cosmetics and plastic surgery can help conceal scleroderma’s damage.
 

Personal Care: Tight, hard connective tissue in the hands can make it difficult to do what were once simple tasks, such as brushing teeth and hair, pouring a cup of coffee, using a knife and fork, unlocking a door, or buttoning a jacket. Occupational therapists can recommend new ways of doing things or devices to make tasks easier. Simple tricks such as using velcro fasteners and enlarged brush handles can help immensely with maintaining independence.

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Family Relationships: Spouses, children, parents and siblings may have trouble understanding the change in energy experienced by someone with scleroderma. This is particularly true when the condition does not present with obvious physical manifestations. The opposite may also occur, with people becoming overly involved and concerned, leading to a loss of independence. The best strategy is to learn as much as possible about the disease and to share all that information with family and friends. Involving them in counselling or a support groups may also help them better understand the disease and how they can assist.

 

Sexual Relations: Sexual relationships can also be affected. For men, the disease’s effects on the blood vessels can lead to problems achieving an erection. 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. 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 counselling, many of these changes can be overcome.

 

Pregnancy & Childbearing: In the past, women with systemic scleroderma were often advised not to have children. But thanks to improvements in 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. People living with scleroderma are at the highest risk of developing severe problems of the heart, lungs, or kidneys during the first three years. Chances of developing major organ complications decrease after those initial three years, and pregnancies are typically safer after that period. Nevertheless, it is important to have the disease and the pregnancy monitored regularly. Finding an obstetrician who is experienced in guiding high-risk pregnancies will be critical.

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