Proteus Syndrome

Proteus Syndrome is a rare syndrome and is considered a progressive overgrowth syndrome. The overgrowth can involve many different tissues, such as the nervous system, the skin and tissue below the skin, connective tissue and organs. This syndrome is caused by a genetic mutation.

Hamartomas (non-cancerous tumor-like growths of tissue) made of connective tissue are often seen on children’s palms and soles as extra folds and creases. Non-cancerous fatty tumors may be apparent below the skin or in different locations throughout the body. Many of these children have epidermal nevi, an overgrowth of the top layer of the skin (epidermal tissue). Children may also have a variety of vascular malformations such as capillary, venous or lymphatic malformations.

The overgrowth can involve all areas of the body. Some infants will be born with areas of overgrowth, but other areas of overgrowth may occur later and in areas of the body that appeared normal at birth. The overgrowth is usually disproportionate, with one area enlarging more than others.

How Is Proteus Syndrome Treated?

Proteus syndrome can present in many different ways and treatment depends on the location and severity of the malformations. The Vascular Lesion Center at Lurie Children's includes multidisciplinary specialists that are available to meet your child and develop a specialized plan of care that meets their unique needs. Depending on the location and severity of the lesion, your child may need to be evaluated by many specialists including dermatologists, cardiologists, ophthalmologists, neurologists, radiologists, otolaryngologists, plastic surgeons, and general surgeons. Our psychologist and social worker will be able to help you and your child adjust to the changes and special needs that this condition requires.