Diseases Home > Living With Scleroderma

People living with scleroderma may find that the disorder affects their ability to perform simple daily tasks, such as grooming, dressing, or bathing. It may also cause problems with family relationships, sexual relationships, and a woman's ability to have children. However, there are things that can help make living with scleroderma easier, such as occupational therapy or a support group.

Living With Scleroderma: An Overview

Having a chronic disease such as scleroderma can affect almost every aspect of your life. Scleroderma may affect your ability to dress, bathe, or handle basic daily tasks. Other areas in which this condition can affect your life include:
  • Appearance and self-esteem
  • Caring for yourself
  • Family relationships
  • Sexual relations
  • Pregnancy and childbearing.

Living With Scleroderma: Appearance and Self-Esteem

How scleroderma will affect their appearance is one of the first fears that people with the condition have, aside from the initial concerns about health and longevity. 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. And the most common symptom of thick, hardened skin can be difficult to accept, particularly on the face.
Although these problems can't always be prevented, their effects may be minimized with proper scleroderma treatment and skin care. Special cosmetics -- and in some cases, plastic surgery -- can help conceal damage from scleroderma.

Living With Scleroderma: Caring for Yourself

Tight, hard connective tissue in the hands can make it difficult to do simple tasks such as:
  • Brushing your teeth and hair
  • Pouring a cup of coffee
  • Using a knife and fork
  • Unlocking a door
  • 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.
Written by/reviewed by:
Last reviewed by: Arthur Schoenstadt, MD
Last updated/reviewed:
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