What is scleroderma
An introduction to this challenging condition
If your child has just been diagnosed with scleroderma, you may be feeling very worried.
There are different kinds of scleroderma, and the milder forms are far more common in children than the serious form.
We are always here to support you and answer any questions you may have, so please get in touch on 0800 311 2756.
Most children who get the condition are diagnosed with 'localised scleroderma'. This is where only the skin is involved, and other parts of the body are unaffected. There are several types of localised scleroderma that your child could be diagnosed with:
This the most common form of scleroderma in children. It appears in irregular patches that start out small and pink. They eventually harden and lead to a scleroderma diagnosis. Children with morphea have an excellent scleroderma outlook. Often these patches will soften and fade leaving no serious long-term consequences.
In linear scleroderma, there are lines of tight, shiny and often darkened skin instead of round patches. These often appear on the arm or leg and extend to the hands or feet.
Linear scleroderma can also affect the underlying muscle, fat and bone, leaving a scarred appearance. It is important to get this treated early in growing children, especially if a patch crosses over a joint, as normal growth and development can be affected.
Children with linear scleroderma often have a good outlook, providing they receive appropriate and prompt treatment.
Linear scleroderma en coup de sabre
This is when children have linear scleroderma on their face and/or scalp. If the lesions are confined to the scalp and forehead then the problem is largely cosmetic.
Parry Romberg syndrome
This type of scleroderma has similar skin lesions, but may involve the whole side of the face and in some cases the tongue. When one side of the face is involved, this can present additional difficulties because the facial bones may not grow properly.
The treatment for localised scleroderma is usually through anti-inflammatory medication, physiotherapy and occupational therapy.
A very small number of children are diagnosed with 'systemic sclerosis', the more serious form of scleroderma where both the skin and internal organs are involved. Of all children with scleroderma, it's less than 10% that have the systemic kind.
Systemic sclerosis can appear in any age. Before puberty it can occur equally in boys and girls. After puberty, it occurs more often in girls.
Children with systemic sclerosis usually have Raynaud's syndrome . 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 is usually through medication and physiotherapy, but children with systemic sclerosis will need expert medical care and long-term support into adulthood.
Scleroderma can have a strong impact on families and children. It may affect a child's ability to do physical activities and might mean numerous hospital visits with many hours out of school.
The child might have to deal with pain, taking medication, exercises and stiffness. They may also have to deal with the side effects of medications such as moodiness and putting on weight with steroids.
At school they may be uncomfortable about the difference in their appearance and physical abilities. The input of a clinical psychologist is helpful for some families and children.
In localised scleroderma, there are some simple tricks to make the affected skin look less obvious.