Scleroderma in children

Scleroderma can affect anyone, at any age. When your child is diagnosed it is important to have reliable information and support when you need it. We are here to help and have resources to help managing at school.

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Morphoea is the most common form of scleroderma in children. It presents in irregular patches on the skin, that initially appear small and pink and will eventually harden. In most cases outlook is excellent and the affected patches will eventually soften and fade, with no serious complications in the longer term.

Watch this webinar with Dr Cate Orteu to find out more detailed information about the types, tests and treatments.

title slide for morphoea webinar by Dr Cate Orteu

Linear scleroderma presents as lines of tight, shiny, and often darkened skin. These often appear on a child’s arm or leg and extend to the hands or feet. It can also affect the underlying muscle, fat and bone, resulting in a scarred appearance. Early diagnosis and treatment for linear scleroderma are very important for growing children, especially if the affected skin crosses over a joint, because growth and development can be affected.

Children with linear scleroderma will often have a positive outlook, provided that they receive appropriate and prompt treatment to minimise any longer-term complications

Localised: Linear scleroderma en coup de sabre

This arises when children have linear scleroderma presenting on their face and sometimes their scalp. If the affected area is confined to the scalp and forehead then the issue can be mainly cosmetic

Localised: Parry Romberg syndrome

This type of scleroderma features similar skin lesions to coup de sabre, but can involve an entire side of the child’s face and may also affect the tongue. When one side of the face is affected, this may cause complications because the bones of the face may not grow properly.

In localised scleroderma, the affected skin does not tan, therefore children should always cover up and use high-factor sunscreen to protect their skin from the sun. There are various treatment options available for localised scleroderma, including:

anti-inflammatory medication,
physiotherapy, and,
occupational therapy.

Systemic sclerosis in children

A very small number of children are diagnosed with systemic sclerosis, the more serious form of scleroderma. This is very rare in children, and probably accounts for less than 10% of all childhood cases.

As well as affecting the skin, systemic sclerosis also affects the body’s internal organs, including the digestive tract and the lungs, the heart and the kidneys. Children will need regular tests to check for progression, and may need regular medication.

A child can develop systemic sclerosis at any age. In younger children who have not started puberty, it occurs equally in boys and girls. After the start of puberty in older children, the condition arises more frequently in girls.

Children with systemic sclerosis usually have Raynaud’s Phenomenon. Internal organ involvement can lead to symptoms such as difficulty in swallowing and heartburn. Sometimes the heart, lungs or kidneys can be affected, which may require specific tests and treatment.

As with localised scleroderma, treatment usually involves medication and physiotherapy, however children with systemic sclerosis will need expert medical care and long-term support into adulthood.

Scleroderma: A Guide for Schools

This guide was created to help head teachers, primary and secondary school teachers, teaching assistants, school nurses and other school staff provide effective support to students with scleroderma.

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Information

Factsheet: Childhood onset of scleroderma

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Information

My two daughters live with localised scleroderma

“As a parent, it’s important to gather the information you feel you need, and I have found that social media and support groups can be very useful. The information from SRUK is always a good starting point.”

Alison