Resources, Scleroderma

Scleroderma is an autoimmune disease that can change the way our skin, blood vessels, muscles work together. The disease can affect just the skin, but it may also affect other organs within the body. People with scleroderma may have areas of thicker skin, stiffness, and feeling fatigued.

We don’t know what causes the condition, but some hypothesize that it is an autoimmune abnormality that some people are born with. It is important to remember that it is absolutely not contagious. Certain genetic factors within family histories may make it more likely that your child will develop scleroderma; interacting with another child with it will not cause them to develop the condition.

Scleroderma is caused by the abnormal growth of connective tissue. This is a result of the body’s immune system attacking healthy tissues. Doctors can diagnose patients based on a person’s symptoms; sometimes they will also recommend a skin biopsy or blood test.

Preschoolers

Scleroderma is something that happens in a body. It can change how a body’s germ fighters, muscles, bones, and skin all work together. Sometimes a person with scleroderma can get hardened or thicker skin. One way to be a good friend to someone with scleroderma is to play with them and treat them with kindness just like you would any other friend.

School Age

Scleroderma is a disease that affects the immune system (the cells that fight germs in your body) and connective tissues (muscles and bones in your body that hold other parts of your body in the right spot).

In an immune system that does not have scleroderma, the germ-fighting cells generally leave all of the healthy cells in the body alone, fighting only the germs, viruses and bacteria that get inside. In an immune system that does have scleroderma the germ-fighting cells (sometimes its fun to call these soldier cells or ninja cells when talking with a young child) get confused about what is a germ and what isn’t. In a body that has scleroderma, the germ-fighting cells can start attacking the healthy cells in those muscles and bones that help hold things together.

Sometimes people with scleroderma have skin that is thick or looks hard. Sometimes people with scleroderma look as if they have a scar or a deep line on their skin. Sometimes their fingers can look swollen or a different color. There are many different kinds of scleroderma and they can all look different. One way to be a good friend to someone with scleroderma is to ask them for permission before you question them about their skin. For example: “Would it be ok if I asked you a question about scleroderma?”

If you have a child with scleroderma and you are trying to help them formulate an explanation for peers or siblings, we would love to help, using details about their specific diagnosis and experience. Please reach out to us at unite@achildrenshouse.org